Newly Diagnosed with Gleason Scores of 9 and 10

Gleason Score 9 and 10

Josephg said:

Cath Removal

My catheter was in for 3+ weeks total.  At the end of 2 weeks, there was still a fair amount of blood in my urine, and testing showed that the urethra repair had not yet fully healed.  I went another week with the catheter, and the blood in my urine subsided.  They pressure tested my urethra, found no leakage, and removed the catheter.  The removal was completely painless, but be prepared for a fountain of urine to gush out, immediately upon removal.  Nothing bad, but even being told ahead of time that it would happen, the quickness and the velocity of the urine flow was startling.

I had periodic discomfort with the catheter, particularly when sitting down.  For me, pushing the catherer into the penis a bit (fraction of an inch) eliminated the discomfort.  I'm not a physician, so I cannot recommend that your husband perform this technique, but I can tell you that it worked for me.

Last, about 1 week into the catheter, I experienced strong pressure in my bladder, and no urine flow into the bag.  I went to the local hospital emergency room, and they performed a routine catheter flush (just connected my catheter to a hose).  I was told that a fairly large blood clot had obstructed the head of the catheter, and the flush immediately removed the pressure and the clot.

Thank you!

Josephg,

Sounds like you had a challenge for sure, but sounds like you have come through it well! Thanks for the forewarning on the gush of urine! I am happy all things worked out, given the discomfort, clots, and need for a flush...we learn so much from each other on this discussion board. Really appreciate the feedback!

Thanks again!

Gleason Score 9 and 10

Post-op Update & Path results

Hi All,

My husband had surgery two weeks ago today. All went well. We had the first attempt at a cath removal one week ago today and ended up back in the ER due to retention...it was the WORST pain he has ever had, and so incredibly difficult to watch. They ended up re-cath-ing him. All was well. We had the second cath removed yesterday and everything is going great. He is peeing regularly and regaining some control. We also received path results yesterday and all margins, as well as the lymph nodes removed, were all 100% clean...we are thrilled. Of course, the first PSA test comes one week from today and we will prayerfully and hopefully wait for that outcome. 

One day at a time.

My husband is feeling great...a bit of pain yet from the stomach sutures and perineium pain from the surgery itself, but all in all, two weeks post-op we are feeling encouraged.

Thoughts here? With Gleasons of nine (in four of the 14 cores taken in the biopsy - all others were cancer-free), we are reminded cells could have escaped, but feel somewhat encouraged that margins are clear.

Thanks again for all the support!

VascodaGama

Good news

I am glad for the news. I hope it all goes your way. You have been super struggling together along his journey.

Best wishes for remission.

VG

Gleason Score 9 and 10

VascodaGama said:

Good news

I am glad for the news. I hope it all goes your way. You have been super struggling together along his journey.

Best wishes for remission.

VG

Thank you

VGama,

Thanks for your comment...you have all been really helpful and I appreciate it! I hope you are finding answers for your newly developed concerns as well.

Gleason Score 9 and 10

PSA Score following prostatectomy

Hi All,

We recieved the first PSA score follow my husband's prostatectomy three weeks ago. The score is 0.18. What are your thoughts/suggestions regarding this score three weeks post-op?

Thanks!

Max Former Hodgkins Stage 3

Gleason Score 9 and 10 said:

PSA Score following prostatectomy

Hi All,

We recieved the first PSA score follow my husband's prostatectomy three weeks ago. The score is 0.18. What are your thoughts/suggestions regarding this score three weeks post-op?

Thanks!

Number

Partner of Gleason 9,

The score is perfect; wonderful. It is well down in the "Undetectable" range, which means so far, no trace of PSA.

PSA tests, even those that are not "Ultrasensitive" virtually ALWAYS show these extremely low numbers, which osciillate up and down a little.  If he had been tested again the same day, the results might have come back as 0.08 or something higher or lower.  It will just wander up and down randomly, meaning nothing. 

His result means "undetectable", and is cause for celebration.

max

Gleason Score 9 and 10

Max Former Hodgkins Stage 3 said:

Number

Partner of Gleason 9,

The score is perfect; wonderful. It is well down in the "Undetectable" range, which means so far, no trace of PSA.

PSA tests, even those that are not "Ultrasensitive" virtually ALWAYS show these extremely low numbers, which osciillate up and down a little.  If he had been tested again the same day, the results might have come back as 0.08 or something higher or lower.  It will just wander up and down randomly, meaning nothing. 

His result means "undetectable", and is cause for celebration.

max

Prognostic Stage

Hi Max,

Thanks for your comments...it feels good to hear good news, though we feel we have been blessed with mostly good news since the "bad" news of being diagnosed!

The path report set his stage at T3/N0/M0/Gleason Score 5+4=9.

We expect another follow-up PSA test prior to our six week follow-up which is scheduled in early March! I will report more when I know it...right now, I am breathing a bit of a sigh of relief with a bit of caution as well!

Thanks again!

Janice

VascodaGama

What could be your doctor's threshold representing RP success?

Janice,

As Max comments the PSA can vary so that you better wait for the next result. I wonder what did the doctor say about this PSA value?

Surgeons have a series of PSA thresholds for comparison with the results and judge outcomes. My surgeon used a PSA<0.06 ng/ml to indicate success of RP in a Gleason 6 patient (my case), when at the one month mile stone. However, my first PSA at 10 days pos RP was 0.12 and the next come at 0.18, followed by 0.26 at the 4th month. I had biochemical and treatment failure so that I should be looking for a salvage therapy and the story prolongs till today

I hope that your husband gets better news than what I received but one must think about his initial diagnosis and now the pathologist's results. Gleason 5+4 is a matter of concern.

I admire you very much and know you have been surffering along this saga of diagnostics and treatments. Now you will be confronted with the outcomes, and this represents the beginning of another period of uncertainty to which you need to adapt. I would recommend to both of you to go travel and visit that place that both always wanted but never did. You need to regain confidence and be prepared for whatever this journey leads you to.

Best wishes,

VG

Gleason Score 9 and 10

VascodaGama said:

What could be your doctor's threshold representing RP success?

Janice,

As Max comments the PSA can vary so that you better wait for the next result. I wonder what did the doctor say about this PSA value?

Surgeons have a series of PSA thresholds for comparison with the results and judge outcomes. My surgeon used a PSA<0.06 ng/ml to indicate success of RP in a Gleason 6 patient (my case), when at the one month mile stone. However, my first PSA at 10 days pos RP was 0.12 and the next come at 0.18, followed by 0.26 at the 4th month. I had biochemical and treatment failure so that I should be looking for a salvage therapy and the story prolongs till today

I hope that your husband gets better news than what I received but one must think about his initial diagnosis and now the pathologist's results. Gleason 5+4 is a matter of concern.

I admire you very much and know you have been surffering along this saga of diagnostics and treatments. Now you will be confronted with the outcomes, and this represents the beginning of another period of uncertainty to which you need to adapt. I would recommend to both of you to go travel and visit that place that both always wanted but never did. You need to regain confidence and be prepared for whatever this journey leads you to.

Best wishes,

VG

Doctor's Threshold

VGama,

Thanks again for your comments. 

My husband is calling the doc's office this morning to get some clarification on the threshold you mention. We have an appointment with the doc for a six-week follow-up in early March, at which time another PSA will be drawn, so we will have two set of numbers to review. My husband is really concerned with the 0.18 reading we received. I felt a bit more optimisitic given it is three-weeks post-op, but perhaps that optimism is a bit premature. We are both looking forward to the information he receives today...his Gleason scores always weigh heavy on me. 

Thanks again and I will be in touch when we know more.

I have kept up with your kidney diagnosis thread and I am sorry there has been more added to your plate; however, it does sound manageable and I hope you have been able to make the dietary changes you were planning.

Janice

Max Former Hodgkins Stage 3

Gleason Score 9 and 10 said:

Doctor's Threshold

VGama,

Thanks again for your comments. 

My husband is calling the doc's office this morning to get some clarification on the threshold you mention. We have an appointment with the doc for a six-week follow-up in early March, at which time another PSA will be drawn, so we will have two set of numbers to review. My husband is really concerned with the 0.18 reading we received. I felt a bit more optimisitic given it is three-weeks post-op, but perhaps that optimism is a bit premature. We are both looking forward to the information he receives today...his Gleason scores always weigh heavy on me. 

Thanks again and I will be in touch when we know more.

I have kept up with your kidney diagnosis thread and I am sorry there has been more added to your plate; however, it does sound manageable and I hope you have been able to make the dietary changes you were planning.

Janice

Addendum

Janice,

Vasco's last post was an important clarification to what I wrote regarding your husband's post-surgical PSA result of .18

I apologize for not remembering, but I think you were the wife who ordered and got a copy of Dr. Scardino's book.  If so, I recommend that you both read his Chapter 20, Rising PSA After Surgery, Radiation, or Other Therapy.  He reiterates that some labs set the Undetectability level as high as .2, but many other doctors (including Dr Scardino himself) emply lower thresholds.  See page 450 especially.

As Vasco also noted, your husband's own surgeon is the ultimate judge in this matter, and he or his nurse or NPs would no doubt be very glad to consult regarding his numbers. I would give them a call.  I do wonder about how soon the test was administered post op however. It seems my first was about a month post op, to give the residual PSA in the bloodstream and tissues time to clear out.   It may be that he got his first test sooner due to his extremely high Gleason level.  Neither I nor anyone else here has credentials; we are just giving thoughts that you should ask questions regarding.

Vasco was also spot-on to note that your PCa journey is far from over.  Each PSA draw, each result causes virtually every patient anxiety, at least for the first year or perhaps longer.   His clean pathology report post-op was actually pretty surprising to me, given the Gleason 9.   That is a cause for thanksgiving and hope, but the jury does remain out on these matters for some time. You seem very well-read and studied in this matter, and know these things yourself it seems.

Hoping all numbers remain low,

max

 

Gleason Score 9 and 10

VGama & Max

Hello,

Thanks for your kind words of wisdom. 

I think just yesterday, things really settled in for us that this is a journey, and one that we will be walking for the rest of our lives in one way or the other. As I mentioned, my husband reached out to his surgeon to get some additional information and asked about the PSA score of 0.18 three weeks post-op. Here are the results of that conversation:

So…my husband talked to his doctor about his PSA number that he had grown concerned about after we got the results on Monday. We were given good information that has “set our heads straight” though would have loved to have heard more definitively that things were close to “over”, but are coming to understand that what we learned today is our “new normal”.

My husband's PSA was drawn three weeks post-op…our doc shared that most docs wait at least four weeks, some as much as six weeks. Our doctor prefers doing it early to establish the first number “in a trend” that will be what we watch for years to come, that depending on that trend will determine when and IF he has to have radiation at any point in the future. The doctor was not at all alarmed by his PSA score for this reason. We will have another PSA drawn before our next appointment in early March which will give us our second number in this new trend. We will continue to pray for zero at each draw, but the reality is, zero may not ALWAYS mean zero.

When we started this journey we were told that his cancer is considered aggressive. It is because of this fact that the doctor explained that we fall into the category of 50/50….there is a 50% of the men with the Gleason scores of 9 that will need a second form of therapy. We know that for sure, but hearing it at this stage of the journey is what we needed to hear, again.

What we hoped could possibly be a life altering event that could be “behind us at some point”, we have come to understand, that it will never be truly behind us…we will work to make it a part of our lives, but not the focus any longer. As the PSA draws come near, we will worry and fret, but in between, we will work to live life…and enjoy it!

My husband was also concerned about a sentence he read in his path results which basically stated that they cancer had escaped the prostate and was detected “in the neck of the bladder”. While his understanding was correct on what he read, the margins in that area were also clear. The doctor explained that what he removed was further out than the cancer had spread in the neck area, so as far as the doctors and pathologists view things, it was still contained.

Now, we move to living life and incorporating this into it. We will work together to make this happen and get the help and support we need to get our heads around this, accept it, continue to feel grateful for his early diagnosis, superior medical care, the ways in which medicine is advancing so quickly, and most importantly the love we have for each other and what we feel from our family and friends. I am also incredibly grateful for the support and wisdom I have gained from you both, and others, on this discussion board...

Onward....

Old Salt

Thanks!

That's a very thoughtful post; full of wisdom. I hope some other patients who are early in their 'journey' will read it.

I also thought that your surgeon responded very well regarding the (somewhat)  early (post surgery) PSA test. Good for all of you! Of course, I do hope that the next PSA test will show a lower number.

Gleason Score 9 and 10

Old Salt said:

Thanks!

That's a very thoughtful post; full of wisdom. I hope some other patients who are early in their 'journey' will read it.

I also thought that your surgeon responded very well regarding the (somewhat)  early (post surgery) PSA test. Good for all of you! Of course, I do hope that the next PSA test will show a lower number.

Appreciate your comments

Old Salt,

Thank you for your comments, understanding, and well-wishes. I will be sure to post again when we get that number...one day at a time...enjoying each!

Janice

Clay Jars

Your Story

Thanks Gleason Score 9 for telling your journey. There is so much good clinical information, balanced with life coping and faith. My husband and I are where you were back in November with a new diagnosis of Pca and gleason scores of 9. A prostatectomy is scheduled for March 15 but tests to determine if it has spread are still pending. I am just learning how to navigate this site so I guess I'll start my own discussion on a separate page. We are working at being educated while "fixing our eyes on Jesus" as we come to grips with the reality of this diagnosis.

Gleason Score 9 and 10

Clay Jars said:

Your Story

Thanks Gleason Score 9 for telling your journey. There is so much good clinical information, balanced with life coping and faith. My husband and I are where you were back in November with a new diagnosis of Pca and gleason scores of 9. A prostatectomy is scheduled for March 15 but tests to determine if it has spread are still pending. I am just learning how to navigate this site so I guess I'll start my own discussion on a separate page. We are working at being educated while "fixing our eyes on Jesus" as we come to grips with the reality of this diagnosis.

Thank you, Clay

Clay Jars,

Welcome to the board and I apologize I am just seeing your post! I am sorry you are here, but thrilled you have reached out to it as a resource as it is a good one. I am happy to hear that you are working to educated yourself...that is one of the MOST important parts of this journey, and the people here certainly helped me along that journey. 

I have more good news to share, but will post it separately with a heading that indicates where we are in our journey today!

Thank you again for reaching out and please feel free to reach out any time. I will read your posts following this as well.

All the best with many prayers and karma sent to you!

Gleason Score 9 and 10

Zero.Zero One!!!!

Hi All,

I am thrilled to share that my husband's second PSA test yielded a result of 0.01! As you can imagine, we are thrilled and this time we get THREE months to just enjoy having taken NO MERCY on PCa! As you all know, and we fully understand, this remains a point in time on our journey! In referencing VGama's question from an earlier post, the doc did share his threshold for the point at which additional therapy would be recommended, which is 0.2. He even stated that if the PSA rose and stayed around 0.17-0.18, with having had a Gleason of 9, they would "round up". 

Sooo...today...we are grateful beyond measure. Excited. Nervous. Elated. Cautious. But, the next PSA will be drawn in June, so we have a few months to enjoy the view out of the vastness of the windshield rather than the small and confining rearview miorror! We will take it!

Thank you all for your support during our journey...I will always stay involved with helping others through their journey, as I know the comfort you have all given us!

#NOMERCY #0.01

hopeful and optimistic

Great results

Glad for you and your husband.

 

VascodaGama

Excited and Elated

Janice,

I chose only two from your choice of the four attributes; I am Exited and Elated for the news. God .... this is like a thriller of Hitchcock.

It is just wonderful to know about the 0.01. I hope you take the opportunity and go some where to celebrate the moment. You both deserve it. Finally the peace of mind you were looking for.

This is a very low REMISSION with deep meaning in a Gs9 case. Congratulations.

How can we celebrate? Maybe a glass of Dom Pérignon this time. There is no better.

VGama

Gleason Score 9 and 10

VascodaGama said:

Excited and Elated

Janice,

I chose only two from your choice of the four attributes; I am Exited and Elated for the news. God .... this is like a thriller of Hitchcock.

It is just wonderful to know about the 0.01. I hope you take the opportunity and go some where to celebrate the moment. You both deserve it. Finally the peace of mind you were looking for.

This is a very low REMISSION with deep meaning in a Gs9 case. Congratulations.

How can we celebrate? Maybe a glass of Dom Pérignon this time. There is no better.

VGama

Dom Perignon it will be!

VGama,

What a wonderful suggestion...we will follow it!

We are beginning our thoughts on celebration. Ironic as it may seem, my husband, being a "numbers"  guy realized that the day we received the news of 0.01, was exactly 100 days from the date of our diagnosis...there has been MUCH that has transpired in those 100 days, as you have followed. We are feeling a bit anxiety ridden and will take some time to "come down" but in all likelihood, our favorite place to vacation is St. John, USVI, we will plan a trip there sometime very soon! 

Paradise awaits!

In all our joy, the knowledge of that darn Gs9, still is "there"...one day at a time we will celebrate and enjoy!

My thoughts, blessings, and my following of your case will continue!

Thank you so much for all the support!

Janice

Gleason Score 9 and 10

hopeful and optimistic said:

Great results

Glad for you and your husband.

 

Much appreciated...

Thanks, Hopeful...