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AS no longer an option

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Well, my Decipher results came back in the intermediate risk category and with the other factors, my doc is recommending we intercede.  I have been walking the tightrope for a couple of months and time to start the process of deciding and actioning the intervention.  I am leaning towards RP but still need to do a bit more study.  My doc ordered an MRI to see if there is any urgency for the intervention.  

I am feeling both shocked and relieved.  I feel like I have a direction and am in good hands at Yale.  Hoping the MRI shows no change and we can put the surgery off until May 2018.  We shall see.  Denis

hopeful and opt...
Posts: 2226
Joined: Apr 2009

If you will, please list all information about your situation to this thread. That is the pathology results; number of cores, Gleason grades, percent involvement of each, any other information from the biopsy. I think that you said that you were going to have a second opinion of the biopsy..what were these results.

Please state your PSA history.

What did the digital rectal exam reveal.

Size of prostate

Any image tests?...what were the results?

Specific details of the decipher test, if available.

Any other information that you think is appropriate.

 I am sure that  you realize any decision needs to be done in a coordinated,  intelligent fashion and not be rushed.

 

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017
65 YO healthy man, PSA 4.1/2 for couple years PSA 5/1/17 4.6, Multiparametric MRI, 5/15/17 showed lesion. 13 core biopsy 3 positive 3+3 and one positive in the lesion, may be overlap All cores less than 30% 8/22/17 - the second opinion Yale pathology shows a small amount of (3+4) in one core, < 5%, decipher yields intermediate risk.  I have been researching and studying for a couple of months and feel well informed.  Thanks, Denis

 

mstoriop
Posts: 37
Joined: Dec 2016

Hello SubDenis.  It appears you have done a fair amount of very good research already having had the MRI and second biposy opinions plus your sudies referenced in another post.  Given what youn have supplied above with a reasonably low PSA and from 4.5 for a couple of years to 4.6 PSA velocity, plus a small amount of 4 in one sample, plus the assumption that everything is contained in the prostate it is my feeling that you have plenty of time to do more due diligence and all available treatment options are open for you to consider.  The more Docs you can interview at as many different facilities as you can reasonably get to the more threads of information you will be able to gather to help you make a decision.  Best of luck on your research and treatment decision.

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, mstoriop, thas the plan a new research project.  Denis

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Sidebar..Both the Prolaris and Oncotype show results on a continuum. I have not seen a decipher test result, ...do they simply have the results by category?

In your diagnosis, one of the cores was upgraded to a 3+4=7. The difference may be in the interpretation of the results by each of the pathologists who reviewed.

At any rate, the 3+4=7 that was diagnosed is intermediate risk. The geonomic test . also intermediate, did not indicate anything that you did not already know. Basically these geonomic tests do not add very much to basic tests that we take...it is only adds a small amount  to what we already know.

Now I am not sure if your biopsy was a fusion biopsy or not?

In my case as you may have read on a different thread, last year, it was found that one of my cores had a small volume of 3+4=7. Since I had a fusion biopsy, and there is ability to go back to the exact spot in the prostate where the 3+4=7 was found, my doc, this year biopsied that spot and the area surrounding for 13 cores to see how extensive the 3+4=7 is. Fountunately for me, no 3+4=7 was found, and I am continuing with active surveillance.

I mention the above, because Active Surveillance may still be an option. You may or may not wish to have another discussion with your doc............I would.

best

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, hopeful,  yes it was a MPMRI and fusion biopsy.  Having G7 puts me on the outer edge of AS criteria and in some places outside of AS protocol. The risk associated with it, at this point, seems greater than the risks of SEs for me.  In my case, the G7 was not detected by MRI rather by the 12 core pattern biopsy.  I will admit, right now I am more worried about greater disease hiding in my prostate.  Too many cases on these forums talk about post-surgery upgrade and the only way to know is to get it out and study it.  

As to genomics test telling us what we already know, I am not sure I buy that. If that was the case why do them?  Either way, my doc and I had a plan, executed it and now the power suggests the prudent thing to do is treat.  

This may not be the decision others make if they were in my shoes, which is the great thing about this disease, also the confounding thing.  We each have to do our due diligence and then make a decision.  

I wish you well in your journey. Denis

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

Denis:

I am sorry to hear that your situation is progressing such to put you in the RP consideration category, but I am glad that you now have an even better refined course of action.  My experiences with cancer have all been similar - unknown, research, information overload, more research, paralysis by analysis, and finally a course of action and a sense of peace.

According to Tom Petty and Jim Bryant, the waiting is the hardest part.  He included that verse in a song while I experienced it everytime I was getting ready to jump from an aircraft.  Those few minutes that you wait to receive the green light are excrutiatingly agonizing.  A literal gut check.  Receiving diagnosis of PCa and then determining a course of action is comparable.  All you can do is check your equipment, mentally review your training, trust all who are involved in the event and then JUMP.  Everytime it was the same.  As soon as I exited that aircraft and became involved and engaged the sense of frustration, anticipation, self-imposed mental stress, and even fear all immediately evaporated.  It was time to act instead of plan.  What a relief.

I am glad that you are quickly passing that threshold.  The mental relief is very beneficial - even if the outcome is a radical prostatectomy!  I wish you luck, and remember to keep your feet and knees together.  That will lessen the likelihood of sustaining a fractured lower extremity when you hit the ground.

Jim  

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Jim jumping out of perfectly good airplanes needs a checkup from the neck up!  ;-) I get it, when we dive submarine, particularly after being in port for some time like refit, you always wonder, did we close all the holes in the people tank!  I do find it interesting to hear the varied of opinions on my case form guys on these sites.  I appreciate all their input.  And each of us has to do what we think is the best, as long as I don't have to jump!  Be well!  Thanks, Denis

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

Sub,

You agonized over this long enough....I'm glad the doctors you trust are edging you to the next obvious step.  Many men beginning where you did would have never considered A/S to begin with, and even some doctors (if I recall correctly) did not think your particulars a good fit for A/S.

So let this be the point where some comfort from moving on bring you some closure.

Only you will know what this means (being a fellow sub guy):    "Officer of the Deck, You have a green board, rigged and checked rigged for dive."

"Very well, chief of the watch. Diving officer, dive the ship !"

A sub is most vulnerable on the surface, and least able to defend itself.

max

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Max thanks and I agree time to "make your depth xxxx!  I am very grateful for my 24 years in the submarine force.  Denis

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Denis, I wish you well with whatever decision that you make.

Here is a study that I came across about the genomic tests.

I can't find it now, but I remember, in the past coming across a study that stated that the genomic test explained an additional few percent over basic gleason, etc tests. I'm pretty sure that a regression analysis was done. To be honest this was a few years ago, and may be dated.

Here is an excerpt from the below study.

"; namely, how often a genomic test makes a clear change in clinical decision-making. Personally, I have found that genomic testing is not always about changing a clinical decision from choice A to choice B, but is just as often about reinforcing a clinical decision when the pre-existing information leaves us uncertain. Finally, the current arrays of genomic tests in prostate cancer are not therapy-linked as they are in other situations such as breast cancer [7], and therefore are properly termed prognostic. This means that we are mostly ‘forecasting the weather’ with these tests rather than knowing we can change it. With further study, however, the opportunity remains to improve these tests to a truly predictive, therapy-linked status."

http://onlinelibrary.wiley.com/doi/10.1111/bju.12695/pdf

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, Hopeful, My doc and I ordered the test because we were on the bubble due to a few G7 (3+4).  So it informed us that the risk is a bit higher and warrants thoughtful consideration to treat.  As I have said elsewhere, I would not be an AS candidate in some programs.  The core issue, IMHO, is risk/reward.  Is the risk of worsening cancer/future metastasis worth dealing SEs?  And that is a very personal decision.  I am at peace with where I am at and am still a sponge seeking information. Denis

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Sorry....I understood that there was only one core of 3+4=7. 

At Johns Hopkins the criteria for AS is very strict, since they are research oriented. Other institutions less so.

I am glad that you and your doc concur with this decision. 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

No, I mistyped.  4 cores were initially g6, one was upgraded to g7 (3+4).  So I am told and believe I am on the outer risk band of metastasis, I believe the new guidelines say I could be on AS with a warning about the risk.  My doc and I looked to Decipher to nudge the decision in one direction or the other.  As of today, I have nudged away from AS.  If about 50% of G6 AS folks have an intervention I must believe it would be a higher number if you add G7.  Also, more post RP upgrades happen then downgrades. SO its a bet, and today I am being more cautious.  Thanks, Denis

hopeful and opt...
Posts: 2226
Joined: Apr 2009

The below study was done to address overtreatment.

53 percent have treatment, however this includes a  32 percent dropout rate where men opt for treatment without disease reclassification. Overall, 19% of participants received treatment in the Active Surveillance protocol.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4970462/

one third of men drop out

http://www.medscape.com/viewarticle/825324

CC52
Posts: 103
Joined: Nov 2013

"This may not be the decision others make if they were in my shoes, which is the great thing about this disease, also the confounding thing.  We each have to do our due diligence and then make a decision." -- SubDenis, 9/27/2017 

I've read your story with interest, and the quote above is why we're here. Best wishes for a positive outcome to you as you move forward.

My regards - CC 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks CC, be well. Denis

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