Recently diagnosed with Gleason score of 9

VascodaGama

SV said:

Good news
After reading conflicting opinions about Gleason scores, until today I was not sure what the difference was between <0.1 and <0.01. My new followup urologist confirmed that they both mean the same...as in none detectable. Whew!

I have discovered though that riding a motorcycle causes me to leak a few drops when getting on and off and sometimes when standing up or sitting down. This did not occur until I started riding for more than an hour at a time so it is a step backwards. Looks like I will have to customize the seat by hollowing out a section to relieve the pressure where my prostate used to be and is now irritating my sphincter.</p>

SV, I read your story
Hi SV
I read your story along this thread and I do congratulate you. It was a great fight against all odds of treatments and against the negative opinions by some posting here. Your attitude conquered the souls of many here, and it will be inspiring for many new comers.

These symptoms you are experiencing are quite normal after the surgery particularly if you are so active in your lovely nights. It is natural for us RP survivors of ejaculating urine when at the arousing timing. Nerves transmitting the sensation will find a different path to get to the objective and with the lack of the previous ones the nerves controlling the sphincter are used as substitutes, giving that explosion sensation. Hopefully they do not get inflamed and become obstructive when peeing. (I experienced that)

Your PSA results within the brackets 0.1 and 0.01 are normal. Remission is considered in values lower than 0.05. The new third generation ultrasensitive PSA tests give still more accuracy with three decimal places (0.XXX ng/ml), showing still an earlier timing of any progress in the treatment, but you do not need it.

I wish you the best in your journey.
VGama

Ken H

Gleason 9
SV,

I am a 57 year old male and was diagnosed last August. My PSA went from 2.3 to 9.7 in 13 months. Biopsy was a gleason 9 with 11 of 12 samples containing cancer. Pre-surgery bone scan and MRI did not indicate any spread of the cancer. I had surgery (DiVinci) on 7 Oct and all lymph nodes were clear of cancer. My 8 week PSA was none detectable (<0.05). Other than a second hospitialization for a staph infection my recovery has gone pretty smooth. I am back in the gym and increasing my strength and endurance every day. I plan to see an Oncologist after the first of the year to discuss additional treatment options. I'll post additional information when available.

Hope your doing well. Ken H

VascodaGama

Ken H said:

Gleason 9
SV,

I am a 57 year old male and was diagnosed last August. My PSA went from 2.3 to 9.7 in 13 months. Biopsy was a gleason 9 with 11 of 12 samples containing cancer. Pre-surgery bone scan and MRI did not indicate any spread of the cancer. I had surgery (DiVinci) on 7 Oct and all lymph nodes were clear of cancer. My 8 week PSA was none detectable (<0.05). Other than a second hospitialization for a staph infection my recovery has gone pretty smooth. I am back in the gym and increasing my strength and endurance every day. I plan to see an Oncologist after the first of the year to discuss additional treatment options. I'll post additional information when available.

Hope your doing well. Ken H</p>

Hi Ken H, Thanks for sharing your experience
Hi Ken H
Welcome to the board. Thanks for sharing your experience. I cannot understand your comment regarding your plan to discuss “additional treatment options” with your oncologist. Your status is just fine and hopefully it will hold for a long time.
Do not be anxious, enjoy the season and have a good New Year.

VGama

SV

VascodaGama said:

Hi Ken H, Thanks for sharing your experience
Hi Ken H
Welcome to the board. Thanks for sharing your experience. I cannot understand your comment regarding your plan to discuss “additional treatment options” with your oncologist. Your status is just fine and hopefully it will hold for a long time.
Do not be anxious, enjoy the season and have a good New Year.

VGama

Glad to hear that you are
Glad to hear that you are doing well amigo. I too, am back in the gym with full strength recovery, that is, I am as strong again as I was the day before surgery 10/19.

I leak one or two drops when lifting maximum loads and sometimes when climbing off of my motorcycle. We have cut out a 2" strip of the foam seat padding to relieve pressure where my prostate used to be but now likely is where my sphincter is located. Something in that area compressed uncomfortably but now it is less so.

I am still using vitamin V but graduated from 3/4 erections to full on towel rack able to cut diamonds. Trouble is that it fades slightly after beginning intercourse but less and less every night. Sex and orgasms in general seem to improve and grow longer with practicing Kegels.

And two weeks ago I had surgery to laser a 15mm uric acid kidney stone. There was some complication so the doc only blasted about a third of it. We are now trying to dissolve the rest by neutralizing my pH with Uricet.

Best of all, the positive attitude and rock solid belief system combined with a full on organic diet free of sugar and dairy makes me feel like a million bucks. Even when I eventually die I'll have a smile on my face.
Happy New Year my brothers

SV

VascodaGama said:

SV, I read your story
Hi SV
I read your story along this thread and I do congratulate you. It was a great fight against all odds of treatments and against the negative opinions by some posting here. Your attitude conquered the souls of many here, and it will be inspiring for many new comers.

These symptoms you are experiencing are quite normal after the surgery particularly if you are so active in your lovely nights. It is natural for us RP survivors of ejaculating urine when at the arousing timing. Nerves transmitting the sensation will find a different path to get to the objective and with the lack of the previous ones the nerves controlling the sphincter are used as substitutes, giving that explosion sensation. Hopefully they do not get inflamed and become obstructive when peeing. (I experienced that)

Your PSA results within the brackets 0.1 and 0.01 are normal. Remission is considered in values lower than 0.05. The new third generation ultrasensitive PSA tests give still more accuracy with three decimal places (0.XXX ng/ml), showing still an earlier timing of any progress in the treatment, but you do not need it.

I wish you the best in your journey.
VGama

correction

correction

SV

SV said:

Glad to hear that you are
Glad to hear that you are doing well amigo. I too, am back in the gym with full strength recovery, that is, I am as strong again as I was the day before surgery 10/19.

I leak one or two drops when lifting maximum loads and sometimes when climbing off of my motorcycle. We have cut out a 2" strip of the foam seat padding to relieve pressure where my prostate used to be but now likely is where my sphincter is located. Something in that area compressed uncomfortably but now it is less so.

I am still using vitamin V but graduated from 3/4 erections to full on towel rack able to cut diamonds. Trouble is that it fades slightly after beginning intercourse but less and less every night. Sex and orgasms in general seem to improve and grow longer with practicing Kegels.

And two weeks ago I had surgery to laser a 15mm uric acid kidney stone. There was some complication so the doc only blasted about a third of it. We are now trying to dissolve the rest by neutralizing my pH with Uricet.

Best of all, the positive attitude and rock solid belief system combined with a full on organic diet free of sugar and dairy makes me feel like a million bucks. Even when I eventually die I'll have a smile on my face.
Happy New Year my brothers

Still <0.1</b>
Hi guys. I just received results from my third PSA test and it continues to be a <0.1. Although my sex life is nearly returned to normal, about three months ago I experienced a regression in erection firmness. That temporary mysterious step backwards has ended along with nearly zero dribbling, even when lifting free weights and motorcycle riding for long periods.

To be safe, we've also remained on a healthy diet of fresh organic vegetables, organic chicken and wild caught cold-water fish. We're still zero sugar but do use very small doses of honey or agave on our organic oatmeal. Dairy is mostly off the table too except once in awhile on a cheese pizza.

With all of the pros and cons about Pom juice, just for the heck of it I take a few swigs a day along with lots of fresh organic berries and two aspirin. If I had to guess, I'd bet that I'll be on vitamin V for life but at age 59 that is not so unusual, with or without prostate problems.

And most of all, I want to thank all of you who contribute such valuable information and encouragement to all of my fellow cancer warriors. The debate will likely go on about the best treatments and so forth, just remember that after you've adequately researched all options that relate to your case, believe, believe, believe. It's the power of positive thought that will always give us the vital edge that can save our lives.

SV

VascodaGama said:

Hi Ken H, Thanks for sharing your experience
Hi Ken H
Welcome to the board. Thanks for sharing your experience. I cannot understand your comment regarding your plan to discuss “additional treatment options” with your oncologist. Your status is just fine and hopefully it will hold for a long time.
Do not be anxious, enjoy the season and have a good New Year.

VGama

x

x

VascodaGama

SV said:

Still <0.1</b>
Hi guys. I just received results from my third PSA test and it continues to be a <0.1. Although my sex life is nearly returned to normal, about three months ago I experienced a regression in erection firmness. That temporary mysterious step backwards has ended along with nearly zero dribbling, even when lifting free weights and motorcycle riding for long periods.

To be safe, we've also remained on a healthy diet of fresh organic vegetables, organic chicken and wild caught cold-water fish. We're still zero sugar but do use very small doses of honey or agave on our organic oatmeal. Dairy is mostly off the table too except once in awhile on a cheese pizza.

With all of the pros and cons about Pom juice, just for the heck of it I take a few swigs a day along with lots of fresh organic berries and two aspirin. If I had to guess, I'd bet that I'll be on vitamin V for life but at age 59 that is not so unusual, with or without prostate problems.

And most of all, I want to thank all of you who contribute such valuable information and encouragement to all of my fellow cancer warriors. The debate will likely go on about the best treatments and so forth, just remember that after you've adequately researched all options that relate to your case, believe, believe, believe. It's the power of positive thought that will always give us the vital edge that can save our lives.</p>

Expect for continuous “remission”
SV
Glad to read about your continuous “remission”. It wouldn’t surprise me if you report improvements in your other health indicators too. Continue those cautionary actions trough diet and physical fitness and you are back-to-the-begining.

Wishing to read more of those <0.1 in your posts.

VG

SV

VascodaGama said:

Expect for continuous “remission”
SV
Glad to read about your continuous “remission”. It wouldn’t surprise me if you report improvements in your other health indicators too. Continue those cautionary actions trough diet and physical fitness and you are back-to-the-begining.

Wishing to read more of those <0.1 in your posts.

VG</p>

Still pulling those zeros
I am happy and relieved to report that my sixth 90-day, post-surgery PSA test is still <0.1
Although my sex life has mostly returned to normal thanks to Vitamin V, when lifting heavy items at awkward positions I occasionally continue to squirt a drop or two. As confident and positive as ever, for some odd reason the day of PSA testing, and especially the day after when I go to pick up my results, my stress level rises dramatically. Even after the nurse hands me the results I believe will reveal <0.1, I am so shook up I have to sit down for a few minutes and catch my breath. What's up with that?

hunter49

SV said:

Still pulling those zeros
I am happy and relieved to report that my sixth 90-day, post-surgery PSA test is still <0.1
Although my sex life has mostly returned to normal thanks to Vitamin V, when lifting heavy items at awkward positions I occasionally continue to squirt a drop or two. As confident and positive as ever, for some odd reason the day of PSA testing, and especially the day after when I go to pick up my results, my stress level rises dramatically. Even after the nurse hands me the results I believe will reveal <0.1, I am so shook up I have to sit down for a few minutes and catch my breath. What's up with that?</p>

Great news very happy for
Great news very happy for you. Keep pulling a zero

VascodaGama

hunter49 said:

Great news very happy for
Great news very happy for you. Keep pulling a zero

We all love the
We all love the Zerrrros.
Congratulations
VG

SV

VascodaGama said:

We all love the
We all love the Zerrrros.
Congratulations
VG

Three years post DaVinci

Although i don't post here much anymore, I still check in occasionally to see what's new. Last November, I completed the required two-years of 90-day PSA tests and since I was still pulling zeros, I graduated to six-month PSA testing--to which are still zeros.Next November when I continue with zeros, my doc says only once-a-year for life.
Here are a few comments regarding what has occurred since surgery.
1. Unfortunately, the love of my life who so graciously helped me through this process, chose to move on a year after surgery. I suppose the strain of the battle ultimately took its toll.
2. I continue to remain very sexually active with the help of a 100mg Viagra. BUT--no Viagra, no sex. This of course, nearly eliminates spontaneous sex but we do get creative.
3. During one out of ten sexual encounters, I squirt a few drops while erection is growing--none during climax though as before. This is embarrassing but I have become skillful at concealing this.
4. In experimenting with and without doing Kegel exercises, for some odd reason, I discovered that doing Kegels had become counter-productive in controlling those erection dribbles.
5. Even with my anatomically-correct motorcycle seat, with the two-inch strip cut out, riding for long periods is something I should not do anymore as it appears to irritate those nerves. More riding equals more dribbling.
6. At sixty-one, I still wrestle in Jiu Jitsu three times a week and do Yoga three times a week--making me feel twenty-one. No dribbling during either workout.
7. My diet consists of almost no red meat, mostly chicken and fish, with lots of organic fresh fruit and vegetables. I do take Vitamin D supplements, DHEA, and Glucosimine for my worn out joints.
8. Every morning, after an 8 ounce green smoothie of spinach, apples and oranges, I practice breathing techniques and mediation. (three smoothies a day.) One recommendation for all is to march on down to Costco and spend $375 on a Vitamix.
9. With heart disease in my family, I get checked regularly and just to keep my cardiologist happy, take the recommended daily dosage of aspirin.
10. I had my testosterone checked last year and it was in the low six-hundred range and then recently, to discover it had dropped to the low fives. Missing the feel-good experience of Testosterone Replacement Therapy, I am tempted to go back on it. Any opinions on this?

SV

Bad PSA test?

It's been eight years of post surgical bliss with the ability to have a normal sex life and very sporadic urine leakage if lifting something at an awkward angle. All of my blood tests over the years  have come back perfect until today. It's been a year since my last test can anyone tell me what the next step is?

Roche ECLIA methodology. According to the American Urological Association, Serum PSA should decrease and remain at undetectable levels after radical prostatectomy. The AUA defines biochemical recurrence as an initial PSA value 0.2 ng/mL or greater followed by a subsequent confirmatory PSA value 0.2 ng/mL or greater. Values obtained with different assay methods or kits cannot be used interchangeably. Results cannot be interpreted as absolute evidence of the presence or absence of malignant disease.
PSA, Free	0.04 ng/mL	N/A ng/mL
Roche ECLIA methodology.
Free PSA/PSA Ratio	10.0 %	%
The table below lists the probability of prostate cancer for men with non-suspicious DRE results and total PSA between 4 and 10 ng/mL, by patient age (Catalona et al, JAMA 1998, 279:1542). % Free PSA 50-64 yr 65-75 yr 0.00-10.00% 56% 55% 10.01-15.00% 24% 35% 15.01-20.00% 17% 23% 20.01-25.00% 10% 20% >25.00% 5% 9% Please note: Catalona et al did not make specific recommendations regarding the use of percent free PSA for any other population of men.

 

Max Former Hodgkins Stage 3

SV said:

Bad PSA test?

It's been eight years of post surgical bliss with the ability to have a normal sex life and very sporadic urine leakage if lifting something at an awkward angle. All of my blood tests over the years  have come back perfect until today. It's been a year since my last test can anyone tell me what the next step is?

Roche ECLIA methodology. According to the American Urological Association, Serum PSA should decrease and remain at undetectable levels after radical prostatectomy. The AUA defines biochemical recurrence as an initial PSA value 0.2 ng/mL or greater followed by a subsequent confirmatory PSA value 0.2 ng/mL or greater. Values obtained with different assay methods or kits cannot be used interchangeably. Results cannot be interpreted as absolute evidence of the presence or absence of malignant disease.
PSA, Free	0.04 ng/mL	N/A ng/mL
Roche ECLIA methodology.
Free PSA/PSA Ratio	10.0 %	%
The table below lists the probability of prostate cancer for men with non-suspicious DRE results and total PSA between 4 and 10 ng/mL, by patient age (Catalona et al, JAMA 1998, 279:1542). % Free PSA 50-64 yr 65-75 yr 0.00-10.00% 56% 55% 10.01-15.00% 24% 35% 15.01-20.00% 17% 23% 20.01-25.00% 10% 20% >25.00% 5% 9% Please note: Catalona et al did not make specific recommendations regarding the use of percent free PSA for any other population of men.

 

May be wrong....

SV,

I may be quite wrong on this, but I do not think that mainstream recurrence criteria pertains to the Free PSA form of PSA testing. I know that is certainly not what most doctors use in the US.  My Urology Group (around 15 surgeons) virtually never uses Free PSA testing at all, even in the initial diagnostic process. I do not see any Total PSA Result in your post above, only a free PSA result (that is how it is labeled).

I have always viewed the free PSA process as a form of hand-wringing for pre-confirmed PCa patients; a way to worry more about interpreting results instead of just getting a biopsy, which is the only authoratative way for determining PCa anyway.

The Probability Chart you show also includes DRE data, which suggests to me that it is not intended for post-RP patients.  (A guy with a bad DRE following R.P. has way bad problems one would suspect.)

 

 

VascodaGama

Bad?

Max's opinion is correct and I think you meant to write "Total PSA = 0.04 ng/mL". The free-PSA is usually expressed in percentage to have a meaning in PCa issues; however, this free PSA marker has no utility in guys without the gland in place (RP).

The 0.04 value is low and it alone doesn't provide you any relevant information too if not in context with other PSA results. Can you describe the PSA histology since operation?

Best,

VG

 

SV

What does this mean?

PSA, Total	0.7 ng/mL	0.0 - 4.0 ng/mL
Roche ECLIA methodology. According to the American Urological Association, Serum PSA should decrease and remain at undetectable levels after radical prostatectomy. The AUA defines biochemical recurrence as an initial PSA value 0.2 ng/mL or greater followed by a subsequent confirmatory PSA value 0.2 ng/mL or greater. Values obtained with different assay methods or kits cannot be used interchangeably. Results cannot be interpreted as absolute evidence of the presence or absence of malignant disease.
PSA, Free	0.11 ng/mL	N/A ng/mL
Roche ECLIA methodology.
Free PSA/PSA Ratio	15.7 %	%
The table below lists the probability of prostate cancer for men with non-suspicious DRE results and total PSA between 4 and 10 ng/mL, by patient age (Catalona et al, JAMA 1998, 279:1542). % Free PSA 50-64 yr 65-75 yr 0.00-10.00% 56% 55% 10.01-15.00% 24% 35% 15.01-20.00% 17% 23% 20.01-25.00% 10% 20% >25.00% 5% 9% Please note: Catalona et al did not make specific recommendations regarding the use of percent free PSA for any other population of men.

 

SV

SV said:

What does this mean?

PSA, Total	0.7 ng/mL	0.0 - 4.0 ng/mL
Roche ECLIA methodology. According to the American Urological Association, Serum PSA should decrease and remain at undetectable levels after radical prostatectomy. The AUA defines biochemical recurrence as an initial PSA value 0.2 ng/mL or greater followed by a subsequent confirmatory PSA value 0.2 ng/mL or greater. Values obtained with different assay methods or kits cannot be used interchangeably. Results cannot be interpreted as absolute evidence of the presence or absence of malignant disease.
PSA, Free	0.11 ng/mL	N/A ng/mL
Roche ECLIA methodology.
Free PSA/PSA Ratio	15.7 %	%
The table below lists the probability of prostate cancer for men with non-suspicious DRE results and total PSA between 4 and 10 ng/mL, by patient age (Catalona et al, JAMA 1998, 279:1542). % Free PSA 50-64 yr 65-75 yr 0.00-10.00% 56% 55% 10.01-15.00% 24% 35% 15.01-20.00% 17% 23% 20.01-25.00% 10% 20% >25.00% 5% 9% Please note: Catalona et al did not make specific recommendations regarding the use of percent free PSA for any other population of men.

 

Am I in trouble?

I just received latest test results. How bad is it?

PSA, Total	2.0 ng/mL	0.0 to 4.0 ng/mL0.0 - 4.0 ng/mL
Roche ECLIA methodology. According to the American Urological Association, Serum PSA should decrease and remain at undetectable levels after radical prostatectomy. The AUA defines biochemical recurrence as an initial PSA value 0.2 ng/mL or greater followed by a subsequent confirmatory PSA value 0.2 ng/mL or greater. Values obtained with different assay methods or kits cannot be used interchangeably. Results cannot be interpreted as absolute evidence of the presence or absence of malignant disease.

 

VascodaGama

SV

PSA=2.0 ng/ml means recurrence. You need to think in a salvage treatment. Typically it involves radiation therapy with or without hormonal drugs. You can visit the same hospital that treat you in 2010 or a radiology clinic closer to you. Everything starts with a consultation but you should get an image exam to try locating the bandit's hideaway. PET scan is the best in recurrences from surgery.

I recommend you to do some research on salvage therapies before the consultation so that you will be prepared to question the physician.

Best wishes and luck in your continuing journey.

VGama

SV

VascodaGama said:

SV

PSA=2.0 ng/ml means recurrence. You need to think in a salvage treatment. Typically it involves radiation therapy with or without hormonal drugs. You can visit the same hospital that treat you in 2010 or a radiology clinic closer to you. Everything starts with a consultation but you should get an image exam to try locating the bandit's hideaway. PET scan is the best in recurrences from surgery.

I recommend you to do some research on salvage therapies before the consultation so that you will be prepared to question the physician.

Best wishes and luck in your continuing journey.

VGama

Thanks amigo. I was hoping

Thanks amigo. I was hoping that there had been some medical advances for prostate cancer in the last nine years. I was happy with City of Hope but is there a better hospital anywhere that we could consider "the best."

VascodaGama

Hi,

Hi,

There have been little advances regarding salvage therapies. Newer radiopharmaceuticals are now used in systemic cases and some treatments using mabs have passed clinical trials phase 3, however the real revolution regards imaginology with PET scans. CT and MRI search for volumes whether PET looks at celular level. Google PET-PSMA for details.

In regards to good hospitals, I recommend you to procure one close to your home because radiation is administered in several sections (about 35) everyday except on Sunday, taking about 20 minutes each time. The facilities should be modern with the latest equipment.

It will save you travel time.

Best

VG