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Posted 12/11/2018 9:25 PM (GMT -5)
Met with my surgeon for my first follow up post RALP last month, uPSA <0.006, great!

But he did say that he wanted to get a Decipher Test done - ok, I had had a Prolaris one done back in May that showed intermediate risk from my biopsy.

He called at 9pm this evening - Decipher test showing "aggressive tendencies" and he is suggesting I speak with the RO again soon to hit it hard and to be on the safe side.

I'm a bit disappointed but I guess better to be early than be late with follow up - I do have a colonoscopy scheduled for Jan 7th and next uPSA scheduled for early Feb.

For my pathology - SVI+ was only on the left side
Posted 12/11/2018 9:38 PM (GMT -5)
The PSA score is great, but it's disappointing that the surgeon thinks you should do adjuvant radiation. The official recommendation of the American Urological Association is that with adverse pathology, you should consider adjuvant radiation:
https://www.auanet.org/guidelines/prostate-cancer-adjuvant-and-salvage-radiotherapy-after-prostatectomy-(2013)

But you have time to think and read about it, talk to different doctors, etc.
Posted 12/11/2018 9:55 PM (GMT -5)
Thank you for the link to the information FiddleCanoe. I thought about it a bit more and I guess it is better to be aggressive than not. RO may suggest following for awhile anyway.

My wife is RN and we'll talk when she's off tomorrow. Surgeon knows her from work and he said that if she or I had any questions, let him know.

I met with the RO prior to the surgery to get the information regarding that form of primary treatment. Same large Uro Group but different offices in different towns.

Since others may find themselves in similar situation Post-Op, will post when new developments occur.
Posted 12/11/2018 10:01 PM (GMT -5)
One funny aside

Surgeon said "you're a young guy, so..."

Work says "you're an old guy", though they keep me around for some reason. I'm fortunate to be able to retire - maybe I'll predicate it on the next few months of follow ups
Posted 12/11/2018 10:01 PM (GMT -5)
Good idea to get it checked out.

SVI involvement isn't good.

Andrew
Posted 12/12/2018 7:19 AM (GMT -5)
The difficult question is whether you should wait for your psa to start to rise, or plunge right in with radiation at the earliest opportunity. The risk of waiting is that you might wait too long, and the cancer has a chance to spread. The risk of plunging right in with adjuvant radiation in is that the cancer might not have progressed and that the radiation was unnecessary. This link on his blog by Tall Allen takes you to a series of posts about early salvage, and helps assess the competing risks:
https://pcnrv.blogspot.com/search/label/early%20salvage
Posted 12/12/2018 7:47 AM (GMT -5)

GG1273 said...
I do have a colonoscopy scheduled for Jan 7th

As a side note, please let the colonoscopy doc know about the 8/18 RALP. I had one the fall after my RALP in spring. I understood at the time it is good for them to know there may be some tender tissue around the same areas they are going to be poking around in. A good doc will know what to look for/avoid.

Not sure how relevant it is, but it wouldn't hurt to remind the doc just before you go under. Couldn't hurt.

If you have any info on cost of the Decipher that you wish to share down the road, please do. I am wondering if I should have taken my uro up on that when he mentioned it a few years ago. I did have a margin+. I opted for a 2nd path by Epstein, and thought the 3+3=6 at margin that he found (first path did not report gleason at margin) was good news and sufficient, but now with rising uPSA, am second guessing myself (sigh). Does most insurance or medicare cover Decipher now?

You're getting uPSA down to .006 -- that's great. if you tested pretty frequently, seems you would spot something quickly if it did occur. Yet, the SVI+ and other tissue+ on your path would be things to be careful about. Tough choice to make. Hope everything goes well for you.

Robert
Posted 12/12/2018 8:23 AM (GMT -5)
1. From everything I’ve read and been told by multiple RO’s and GI’s, waiting 9 to 12 months after a RALP before getting a colonoscopy is highly advisable. There is lots of scar tissue that needs time to heal.

2. A colonoscopy can play havoc with PSA readings, so have it tested beforehand.

3. Get a copy of your full Decipher test AND request a copy of the GRID report from it. They are most informative, open to interpretation, and your RN wife could help. I wouldn’t make any serious decisions until I understood exactly what these ‘advisory’ reports indicated.

4. Good luck!
Posted 12/12/2018 8:36 AM (GMT -5)
FWIW, SVI is SVI, whether it's bilateral or just one side. Stats show that 50% of men who are T3b and decline adjuvant RT will develop BCR, hence the "very high risk" classification of SVI and recommendation for ART in 6-12 months, when most healing from RP has occurred.

Your PCa was at the base, as was mine, making it difficult to detect from a DRE and often has already progressed before action is taken, in my case based only on a consistent rise in PSA (teens and twenties). I should also mention that post-op my PSA was undetectable, then in a matter of months went to <.02, .02, <.03, .03 ... a gradual rise but a rise nonetheless, prompting my RO to start hormone therapy.

As you are still early in the process - and a young guy, I'd say you have time for a few more PSA's to confirm that it is indeed rising. Mine was checked every five weeks, though none of my doctors ever suggested any genetic testing. It was pretty much a steady stream of events from MRI thru ART. Now just waiting for the Lupron to wear off... which is taking its time, but keeping my PSA undetectable.

Good luck to you going forward. It might not be a bad idea - if you can afford it - for you and your wife to let your employers know you intend to slow down a bit and ease into retirement. We did, and just in time. I went part time and eventually just consulting in my final years. As soon as my wife and I retired we both got hit with cancer, and suddenly life becomes a lot shorter. Once you reach your early 60's it's just one thing after another.
Posted 12/12/2018 7:05 PM (GMT 0)

GG1273 said...
Met with my surgeon for my first follow up post RALP last month, uPSA <0.006, great!

GG1273 said...
… Decipher test showing "aggressive tendencies" and he is suggesting I speak with the RO again soon to hit it hard and to be on the safe side.

GG1273 said...
Same large Uro Group but different offices in different towns.


All I want to say is that you should continue to be your own best advocate.

I believe that the Decipher is a good test, but you should get the actual results (let us know when you find out) and study-up on the ranges and interpretations. But moreover, be aware—nothing more than that...be aware, and be your own best advocate—of the presence of a "loophole" which is currently allowing the types of within-private practice "self-referrals" you have described, and that this is a debated topic on whether this is resulting in a new form of "over-treatment." It's an ethics question: from the patient's perspective, it risks unnecessary additional side effects; from a public health perspective, it drives up health care spending without clear benefits to the patients.

Federal law, Ethics in Patient Referrals Act, prohibits physicians from referring patients to medical facility in which he or she has a financial interest. The law is intended to protect patients—to ensure that medical decisions are made in the best interest of the patient, without influence or conflict of interest of financial gain by the treating physician. The law, however, includes a loophole for In-Office Ancillary Services (IOAS)...and self-referrals of IMRT radiation therapy in urology clinics is currently allowed through the IOAS. There have been urology offices who have been cited and fined for breaching fine-line which the loophole allows for the obvious financial gain. (Imagine the amount of patient follow-through needed for those cases who were eventually cited and fined, especially considering the patient "trust" that most men initially placed in their surgeon). Not saying this is the case here, but be aware of this contemporary ethics issue which generally flies below most patient's radar. Ultimately, I'm just saying that in my opinion informed, empowered patients tend to have the best satisfaction with their treatment decisions. Be your own best advocate.

Besides those cited/fined cases, as a numeric guidepost be aware that compared to men seen by urologists employed by NCCN cancer centers, men seen by private practice self-referring urologists were 6.18 times as likely (or 518% more likely to undergo IMRT for their prostate cancer (p<.001), according to a study by Georgetown University's School of Public Policy.

best wishes

Post Edited (Blackjack) : 12/12/2018 12:35:55 PM (GMT-7)

Posted 12/12/2018 2:19 PM (GMT -5)
CG1273 - I am a few months behind you with similar concerns so I will be following this thread closely. My first PSA and followup is in February which is when the doctor said we will talk further about the items you bring up although he had the decipher test run already (low side of ave. risk). He said to relax and not worry about anything until we meet again as time is on our side now and nothing can be done for a while anyways until fully recovered.

I retired in June then ran into this little side adventure starting with my annual physical and higher PSA in July. So I had a month of retirement followed by making the urologist appointment and the many events between then and RALP in Nov. This would have been a tougher adventure had I still been working (you can take almost any appointment that you want at a preferred location when you are retired) but on the other hand, work would have provided a distraction from the tests and pending surgery for three months with only one thing to think about. The retirement planning takes a little turn with this diagnosis also as planning to live to 95 seems more impractical and living for today has new meaning.

In any event, the T3 diagnosis is not the best and the subject of preemptive radiation treatment comes up. There are arguments to made for and against depending on how lucky one feels. It is still early for me (you are there now) but my concern at this point is having "another bite at the apple" regarding possible side effects for an indeterminate benefit. I have been recovering pretty well at 5 weeks post-op so far and would hate to see QOL issues compromised by additional treatments. Maybe I will feel differently in two months after studying more and this thread continues.

Re: Funny Aside - I am 66 and the doctors refer to me as being "young" and in "good shape". I would like to know what they are using as the yardstick to make these declarations? or do they say that to everyone to make them feel good?
Posted 12/12/2018 2:39 PM (GMT -5)

Mumbo said...

Re: Funny Aside - I am 66 and the doctors refer to me as being "young" and in "good shape". I would like to know what they are using as the yardstick to make these declarations? or do they say that to everyone to make them feel good?

They say it to anyone who walks in under their own power smilewinkgrin
Posted 12/12/2018 3:15 PM (GMT -5)
Blackjack

Re: "Federal law, Ethics in Patient Referrals Act, prohibits physicians from referring patients to medical facility in which he or she has a financial interest". I think this law applies to DHS-Medicare & Medicaid reimbursed providers only although there may be some state laws that cover more. This topic should be another thread if not already discussed.
Posted 12/12/2018 3:36 PM (GMT -5)

Mumbo said...
Blackjack

Re: "Federal law, Ethics in Patient Referrals Act, prohibits physicians from referring patients to medical facility in which he or she has a financial interest". I think this law applies to DHS-Medicare & Medicaid reimbursed providers only although there may be some state laws that cover more. This topic should be another thread if not already discussed.


Mumbo, you are correct. Although at an average age of 67 at diagnosis, probably half or more men treated for PC are on Medicare/Medicaid. In private practice insurance, it is the AMA Code of Medical Ethics Opinion 9.6.9 which addresses this exact same issue.

You are also correct...this important & valuable point of awareness should be added to the "Read Me First..."sticky thread.
Posted 12/12/2018 3:52 PM (GMT -5)
I will be following your thread closely. My husband is in a similar situation. RALP on 8/29, current PSA 0.06. Decipher "high risk" with some less than happy predictions for the next 10 years without treatment. We met with the mo several weeks ago who ordered an Auxumin PET scan - he was supposed to have the testing today, but the first batch of tracer didn't meet specifications and they couldn't get another dose in from Chicago - now scheduled for next Tuesday with follow-up appt with mo on Weds and the ro first consultation visit on Weds as well. We started this journey last January with the first elevated PSA - I feel like we have been slogging through the mud ever since. Best of luck to you as you travel this road that no one ever wanted to take.
Posted 12/12/2018 5:00 PM (GMT -5)

Bobbiesan said...


As a side note, please let the colonoscopy doc know about the 8/18 RALP. I had one the fall after my RALP in spring. I understood at the time it is good for them to know there may be some tender tissue around the same areas they are going to be poking around in. A good doc will know what to look for/avoid.

Not sure how relevant it is, but it wouldn't hurt to remind the doc just before you go under. Couldn't hurt.

If you have any info on cost of the Decipher that you wish to share down the road, please do. I am wondering if I should have taken my uro up on that when he mentioned it a few years ago. I did have a margin+. I opted for a 2nd path by Epstein, and thought the 3+3=6 at margin that he found (first path did not report gleason at margin) was good news and sufficient, but now with rising uPSA, am second guessing myself (sigh). Does most insurance or medicare cover Decipher now?

You're getting uPSA down to .006 -- that's great. if you tested pretty frequently, seems you would spot something quickly if it did occur. Yet, the SVI+ and other tissue+ on your path would be things to be careful about. Tough choice to make. Hope everything goes well for you.

Robert

Hi Robert

Thanks for the follow up

GI doc and I went over the prostate surgery information - same hospital system. He was more interested in the Micro Bowel Perforation I "developed" two weeks post op. Spent a week in the hospital for that issue. He felt comfortable with 6 weeks post that hospitalization. I pushed it out a few more months.

Not sure about the Decipher test being paid for or not. I have Blue Cross primary and my wife's self insured hospital medical insurance secondary. So my out of pocket has been $0 outside of the insurance premiums. The Prolaris test that was done post my biopsy was not covered by my Blue Cross Insurance as not medically necessary. Secondary picked it up.

Post Edited (GG1273) : 12/12/2018 3:09:38 PM (GMT-7)

Posted 12/12/2018 5:02 PM (GMT -5)

garyi said...
1. From everything I’ve read and been told by multiple RO’s and GI’s, waiting 9 to 12 months after a RALP before getting a colonoscopy is highly advisable. There is lots of scar tissue that needs time to heal.

2. A colonoscopy can play havoc with PSA readings, so have it tested beforehand.

3. Get a copy of your full Decipher test AND request a copy of the GRID report from it. They are most informative, open to interpretation, and your RN wife could help. I wouldn’t make any serious decisions until I understood exactly what these ‘advisory’ reports indicated.

4. Good luck!

Thanks for all of the reminders Gary - when the Dr sees my list, they always know that they are in for a long session. And if my RN wife comes along...worse, but most of them know her from work
Posted 12/12/2018 5:07 PM (GMT -5)

Mumbo said...
CG1273 -

Re: Funny Aside - I am 66 and the doctors refer to me as being "young" and in "good shape". I would like to know what they are using as the yardstick to make these declarations? or do they say that to everyone to make them feel good?

All three Uros (different locations) said the same thing. I found out from my original Uro (did biopsy, DRE and assisted on the RALP) that he looks at parents and sibling ages. Both of my parents are in their mid-80's so he's deducting that I'm young relative to that.
Posted 12/13/2018 4:35 PM (GMT -5)

Mumbo said...
CG1273 - I am a few months behind you with similar concerns so I will be following this thread closely. My first PSA and followup is in February which is when the doctor said we will talk further about the items you bring up although he had the decipher test run already (low side of ave. risk). He said to relax and not worry about anything until we meet again as time is on our side now and nothing can be done for a while anyways until fully recovered.

I retired in June then ran into this little side adventure starting with my annual physical and higher PSA in July. So I had a month of retirement followed by making the urologist appointment and the many events between then and RALP in Nov. This would have been a tougher adventure had I still been working (you can take almost any appointment that you want at a preferred location when you are retired) but on the other hand, work would have provided a distraction from the tests and pending surgery for three months with only one thing to think about. The retirement planning takes a little turn with this diagnosis also as planning to live to 95 seems more impractical and living for today has new meaning.

In any event, the T3 diagnosis is not the best and the subject of preemptive radiation treatment comes up. There are arguments to made for and against depending on how lucky one feels. It is still early for me (you are there now) but my concern at this point is having "another bite at the apple" regarding possible side effects for an indeterminate benefit. I have been recovering pretty well at 5 weeks post-op so far and would hate to see QOL issues compromised by additional treatments. Maybe I will feel differently in two months after studying more and this thread continues.

Re: Funny Aside - I am 66 and the doctors refer to me as being "young" and in "good shape". I would like to know what they are using as the yardstick to make these declarations? or do they say that to everyone to make them feel good?

I am 67 Years young and in good shape. I'll be following this thread closely because I had an MRI guided biopsy all nine cores were positive in three locations. Five or 4+3 and four were 3+3. I hope that I can avoid follow-up radiation and my surgeon tells me that it's about a 30% chance that I will have but I'm looking at it like a 70% chance I will not have to.
This particular disease really sucks guys. Surgery is on January 4.
Posted 12/13/2018 4:51 PM (GMT -5)
Good luck on the 4th Tebozo. You can only go into it hoping for the best, but prepared for the worst. Yes, about a third of the time a biopsy will be upgraded following surgery. You already had a pretty solid hit in your biopsy. Here's hoping it's fully contained.
Posted 12/13/2018 6:23 PM (GMT -5)
Tebozo - Good luck also, not the best biopsy results but the post-op pathology is the one that counts so hope for the best. This thread means a lot more after you have the final results.

PCa does suck and takes a while to deal with it. My wife is 15 years past breast cancer, yahoo!, and the diseases follow similar patterns, the denial, guilt, etc. She has been pretty normal for the last five years after the magic 10 year mark when released from care. I assume PCa is similar at 10 years after hopefully successful surgery. You just can’t rehearse for this stuff, you only live it when it happens to you.

Did your doctor have a CT and bone scan done to check for spread? That provides some good information to make treatment decisions. Now you just stop worrying since the surgery is scheduled, just go to your pre-op physical and stop eating the day before. No good can come from studying it too much after the decisions are made or you will second guess everything you have done repeatedly.
Posted 12/14/2018 9:46 PM (GMT -5)
CT , bone scan and colonoscopy all clear.
Thanks
Posted 12/14/2018 9:56 PM (GMT -5)
good news doubts...bad news believes....must be dying water...living water rises...dying water sinks...the reverse of the good egg vs the bad egg......yet...as a interesting aside...to me ......water is always involved...that...in a very odd way comforts
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