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Low PSA (2.2) High Gleason Score 4+5=9

Cherokee6
Posts: 32
Joined: Oct 2011

Submitted by Cherokee6 on October 29, 2011 - 4:05am
Thank you for this site.

My story is below. The first question I have is this.
My primary concern is, because my PSA never got above 2.2 and I turned up with a Gleason 9, is my current PSA of >.1 really a true indicator of the presence or reoccurrence of the cancer? I feel that if I have any movement at all in my PSA that I will be in deep doo doo.

Does anyone know of any other method of checking besides bone scan and CT scan? I'm not sure but I think the PSA is the primary tool that the VA uses to determine disability even thou my VA doctor has written to them saying that Prostate Cancer is really a 15 year disease. I feel very fortunate that I have the VA on my side and feel bad for someone going it alone with this disease.

Cherokee6

60 years old when diagnosed
PSA only 2.2 at diagnosis. (Don't trust only PSA as indicator)
DRE (digital rectal exam) lumpy
Bone scan negative for mets
CT scan negative for mets
Biopsy (November 13, 2009) Yes, it was a Friday
12 of 12 biopsy samples positive for cancer
Radical Prostitectomy (December 14, 2009)
Positive margins, seminal vesicle involvement. negative lymphnodes, negative mets
Gleason score 4+5= 9
Stage T3b N0 M0
Current PSA is less than .1 (August 2011)
I ware a Cunningham clamp during work hours to cut down on leaking. (hurts after a while so can't leave it on for more than a few hours)
If I don't ware it I change pads from 6-8 times per day.
At night I get up 5 or more times to go to bathroom and sometime wake up with hot flashes from hormone treatments.
Besides that, Life is good!

VascodaGama's picture
VascodaGama
Posts: 1592
Joined: Nov 2010

Cherokee

The pathological report with positive extra capsular extension is highly indicative of risks for recurrence. I notice your comment on the adjuvant hormonal treatment which surely is “masking” your real PSA level. Recurrence is difficult to be declared and tests to find/locate cancer after surgery do not exists particularly if tumours are smaller than 1mm.

Under hormonal influence and with no prostate in place your PSA should be lower than 0.05, to consider your case in remission. I would recommend you to get the test done in ultra sensitive assays of two decimal places (0.XX ng/ml). They are more appropriate to follow up your status.

It is common to see PCa cases with high Gleason scores and low PSA levels. Poorly differentiated cancer cells produce usually less PSA serum (grades 4-5). These grades are also aggressive for spread which implies the need to tackle any advance the earliest.

Dr. Charles Myers, a high respected oncologist in PCa, considers radiation of lymph nodes a must do thing in cases highly susceptive for recurrence. This is what could be your case due to the high Gleason and positive margins. He recalls the need of considering the presence of oligometastases (a state of recurrence cancer at the lymph nodes before it becomes systemic) which could be treatable with radiation. The hormonal treatment is not curative but palliative and it can hold any advance of the bandit for long periods of time.

A newer MRI image study named USIPO (ultrasmall superparamagnetic iron oxide) using ferehame as contrast agent is said to detect cancer at the lymph nodes successfully. The test is done at Sand Lake Imaging in Orlando, Florida.
You can read more about this test in other threads in this forum and searching the net.

Welcome to the board.
Wishing you peace of mind.

VGama

Cherokee6
Posts: 32
Joined: Oct 2011

VGama,

Thank you for your prompt response. You sure seem to be a staple on this forum. Evidently the VA only goes to .X ng/ml however I do recall prior to using the VA exclusively, the blood tests from my civilian doctor was in fact >.05 so for now I will take the >.1 as undetectable.

I would like to stop taking the hormone treatments but with my PSA virtually undetectable using it I don't want upset the apple cart if you know what I mean?

My civilian doctor told me that he wanted me to continue with hormone treatments for at least 3 years with the hopes that by starving the prostate cancer cells they will dye off. Not sure if he was just humoring me or what. The VA doctor added Bicalutimide 50MG daily. I'm not sure why he did that with my PSA undetectable without it.

Has anybody on the forum been on Hormone treatment for three years?

Thank you for your response and I will search out USIPO Post.

Cordially,
Cherokee6

tarhoosier
Posts: 188
Joined: Aug 2006

Cherokee:

Almost unnoticed at the bottom of your history is the item about your hormone treatment immediately (it appears) after surgery. This makes your psa an unreliable indicator of disease status.
Your high volume disease (12 of 12), your identified spread at surgery (T3) and your high gleason make it almost certain your tumor cells have migrated beyond the prostate area. Healing of urinary function is an absolute requirement before proceeding in another direction, so work on that today, tomorrow, and every day.
Did you have a post surgery psa? The result?

Cherokee6
Posts: 32
Joined: Oct 2011

tarhoosier,

After receiving your reply I went back to review my early records from December 14, 2009 which was the date of the radical and February 3, 2010 which was the date of my first Hormone Injection and I can't find any place during that time that they performed a PSA test.

As far as the urinary function, I don't think I have much of a chance with that. I tried and tried with the Kegals exercises with no luck. While looking at my early records I mentions that the cancer was into my urethra and I remember the doctor saying that he had to cut across the sphincter so I'm afraid that I'm left with what I've got in the incontinence department. Reviewing my Postoperative Diagnosis. They were concerned that they were dealing with positive margins so they removed the lymph nodes on both sides but the were both negative.There was thickening of the vascular pedicles and thickening near the urethra, very concerning for cancer. He also said that the rectal wall was stuck to the posterior portion of the prostate. This would explain the discomfort that I had prior to the operation. The cancer had metastasized to the seminal vesicles. Thanks for your comments.

Cherokee6

hunter49
Posts: 204
Joined: Oct 2011

Hi Cherokee:

I have a friend who had a 1.9 PSA and Gleason 4 + 4. In some cases aggresive cells do not make the PSA rise so much. You may want to look into Johns Hopokins they have a lot of trials using vaccines on re-occurnece with decent results. Good luck. I am sure this will be controlled.

Cherokee6
Posts: 32
Joined: Oct 2011

Hunter,

Thank you for the words of encouragement.
I will check out the John Hopkins site.

Cordially
Cherokee6

hunter49
Posts: 204
Joined: Oct 2011

One other thing. you may want to have a PET scan done. This checks for metabolic activity in cells that absorb glucose in a very high rate. they inject you with a glucose formula and within 30 minutes scan you. The areas where cancer mets may be light up as they need 6 to 7 times of suger to survive. Cancer cells are not very effecient engines.

Cherokee6
Posts: 32
Joined: Oct 2011

Hunter49,

I may have had that just after the biopsy. I know the injected me with a dye of some sort and I had to wait for about a half hour before they took a scan. That came back negative.

Cherokee6

VascodaGama's picture
VascodaGama
Posts: 1592
Joined: Nov 2010

Cherokee

Some of your doubts may be answered with a (0.XX ng/ml) PSA test. You have no prostate gland so that serum PSA should be in the very low ranges close to 0.03-0.05. With the hormonal drugs this sensitivity should be considered still lower close to ranges of <0.01, particularly, if you are on ADT2 (androgen deprivation therapy) with a LHRH agonist plus an Anti-androgen (bicalutamide). All this numbers can be considered 0.1 (present PSA) but they all have different meanings in the diagnosis of your actual situation.

In your above posts you describe a “bad picture” on what was found after RP. In open surgeries (and in some robotic) doctors use their hands and tactfully identify suspicious thickening masses, which they relate to cancer, even if they are not hard tumours. This is typical of masses composed of micro-metastases.

My opinion as a layman and based on the many readings and comments from experienced surgeons (mine included), is that you may be at risk for recurrence due to the micrometastases to which radiation treatments have not been totally effective. Doctors cannot identify all the targets where to aim the rays, killing some and expecting the others to die (but without assurances for total eradication). In such cases many doctors do not radiate and choose instead for the hormonal in the intent of holding the bandit.
I would recommend you to discuss the above with your doctor just for peace of mind.

Hormonal drugs are effective in killing low grade cancer by starvation but aggressive forms (4-5) are difficult to handle because these aggressive types of cells are known to mutate and can live in low levels of testosterone. In some mutations they start producing their own testosterone to survive (this is regarded as intratumoral activity).
To such cases, doctors (oncologists) recommend total blockade (ADT3) adding a third drug to the “cocktail” known as 5-alfa reductase inhibitor (5-ARI). This is to block the production of a more powerful (x5) type of testosterone called Dihydrotestosterone.

Recently newer drugs capable of handling intratumoral activity have been approved to treat advanced cases. You may start taking one of them called Zytiga (abiraterone acetate) now substituting the bicalutamide. This drug has less side effects and better response in aggressive cancers.

I am not a doctor and would suggest you to read details on the above in the net (google the terms) to discuss with your doctor or for getting second opinions from specialized oncologists.
Regarding the MRI, if you can’t get the USPIO, still try to get the test done with a modern 3-testla machine (endorectal) that is higher in resolutions. Testosterone level tests are also recommended to guys on ADT.

My story is similar to yours and we are of the same age (62) but my case is 9 years older than yours.
I was diagnosed with micro-metastases in 2001 after open surgery in 2000. The PSA post op (50yo) was 0.18 (pT3apN0) and recurrence was declared just 6 months after with a value of 0.46. I was not recommended to salvage radiotherapy because of the above “believe/theory” on micrometastases. However, my Gleason score was low at 2+3=5 which grades are for well differentiated cancer cells, low aggressive for spread.
In 2006 with a PSA=3.80 I did SRT and the PSA decreased to 0.05 thirteen months later. My surgeon’s opinion was that the rays successfully hit the bulk of the cancer as demonstrated by the aggressive decline in PSA.
Nevertheless, recurrence was again declared in Dec2009, which confirmed the correctness of the initial diagnosis for the existence of Micrometastases. I am now considered systemic but all the tests and image studies have been and are negative to apparent metastases.

I am on ADT (mono therapy Eligard 6-month shot) since Nov2010 (PSA=1.0). The latest PSA=0.03 shows that the treatment has been effective in holding the cancer “at bay”. I am one of the lucky ones in regards to treatments’ side effects, because I am continent, got mild symptoms from ADT and am still active in my lovely nights (but “handicapped”).

Wishing you find a way to over-pass this bump in your journey.

VGama

Cherokee6
Posts: 32
Joined: Oct 2011

VGama,

Thanks again for your obviously knowledgeable comments.

I don't understand why an increase in PSA confirms a recurrence of prostate cancer unless, once you have prostate cancer all PSA contains cancer or unless PSA is the cancer. There must be some direct relationship between PSA and Prostate cancer cells otherwise why would PSA matter?

Is it your opinion that due to my low PSA at the onset, pre RP (2.2), a smaller move upward in my post PSA readings is more critical than say someone that had a PSA higher than 10. Because I'm thinking that if my prostate cells were only producing very small amounts of PSA that trend would apply to a recurrence.

I an going to contact my civilian doctor, the one that performed the DiVinci RP and schedule a consultation and have him perform a PSA test because the Lab they used did carry it out to .XX and also discuss the Testosterone Level Test.

Thanks again and I hope the above questions aren't too dumb but I am still trying to get my head around the low PSA level of 2.2 and it concerns me that they are placing all their diagnostics on this number so your vast experience is welcomed.

Cherokee6

hunter49
Posts: 204
Joined: Oct 2011

more than likely that was a bone scan. Ask your doctor. Either way any negative is a good one. where are u located near?

Cherokee6
Posts: 32
Joined: Oct 2011

I'm located in Naples, FL

VascodaGama's picture
VascodaGama
Posts: 1592
Joined: Nov 2010

Cherokee

PSA (prostate specific antigen) is produced by prostatic cells (benign and cancerous). Surgery for prostate cancer dissects the prostate gland totally leaving no cells behind. Without prostatic cells in the body there should be no PSA.

Logically, if PSA is found in the serum after surgery it means that some prostatic cells (benign or cancerous) are still alive and producing it. Positive PSA tests post surgery certifies the presence of cells left in the body and if cancerous they are called metastatic prostate cancer. Recurrence is declared when the histological PSA increases constantly and reaches a threshold level of 0.20 ng/ml. Nevertheless this is considered valid in cases not influenced by hormonal therapies.

Here is detail explanation of PSA; http://www.psa-rising.com/med/info/psa.htm

In your case recurrence is not verified, but the pathological report indicates a series of findings that could cause future recurrence which requires “closer" follow up.
Your doctor is using the PSA tests in the control which may be enough to check for recurrence, but it should be in a must lower levels of PSA due to the influence of the hormonal drugs you are taking.

Your pre op PSA of 2.2 is not “novelty”. The usual normal level is in the range between 0 and 4 but it differs from person to person. Many guys are found with cancer at the 2 mark. The importance in PSA screening is the upward trend of a series of results which may signal suspicious presence of cancer. The "baddy" would be only declared with a positive biopsy.

You can do some researches in the net about the meaning of PSA in the context of diagnosis before treatment and as a follow up tool after treatment.

The best to you.
VGama

Cherokee6
Posts: 32
Joined: Oct 2011

VGama,

Thank you for sending me in a different direction regarding PSA follow up. Although I have performed much research of Prostate Cancer on the Net, I haven't specifically researched PSA follow up after a RP.

I have also visited the http://www.psa-rising.com/med/info/psa.htm site and it was very informative.

Some time I just need another point of view to get me back on track.

Thanks,

Cherokee6

bimmes
Posts: 1
Joined: Jan 2012

I am in Naples too, great area. What part are you from?

Cherokee6
Posts: 32
Joined: Oct 2011

I'm in North Naples in Longshore Lake.

Cherokee6
Posts: 32
Joined: Oct 2011

I'm in North Naples in Longshore Lake.

tonahawk899
Posts: 9
Joined: Jul 2011

Cherokee: I have written one response to you, so far no answer, we are VERY SIMILAR in our diagnosis and treatments, mutual support would be great, tonahawk@msn.com Happy New Year!

tonahawk899
Posts: 9
Joined: Jul 2011

?????

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

tonahawk,

Cherokee hasn't posted since October. It's possible he's not monitoring this site on a regular basis or he has moved on to another forum or resolved his issues and no longer is looking online for answers. You might try sending him a personal email through this site. Click the "CSN Email" link on the left side of this web page.

Cherokee6
Posts: 32
Joined: Oct 2011

Tonahawk899

I must apologize for not responding, Kongo is right, don't take it personnel. I have not been online at this forum. I am new to this forum thing and have been surfing the net looking for answers. You said that you sent me something but it's not on this thread so where can I find it? As is said this is new to me.

I am happy to share experiences. I look forward to your response. Is there a way to get sent an email when someone responds in the event I'm not online every day?

Cherokee6

Cherokee6
Posts: 32
Joined: Oct 2011

Tonahawk899

I must apologize for not responding, Kongo is right, don't take it personnel. I have not been online at this forum. I am new to this forum thing and have been surfing the net looking for answers. You said that you sent me something but it's not on this thread so where can I find it? As is said this is new to me.

I am happy to share experiences. I look forward to your response. Is there a way to get sent an email when someone responds in the event I'm not online every day?

Cherokee6

VascodaGama's picture
VascodaGama
Posts: 1592
Joined: Nov 2010

You will receive at your private/registered e-mail address, mail from the administrator of this forum informing of your "Newer CSN Email".
VG

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