Introduction to group. I have hesitated to introduce myself to this group as I’m not sure I belong here – Yet!!?? Complex history.
Age 77. Reasonably good health. Low T symptoms for many years including osteopenia. Slowly rising PSA over 20 yrs. Normal DRE on numerous occasions.
8/2016: MRI PROSTATE followed by Bx:
MRI IMPRESSION: Significant prostate cancer is likely to be present. This may be amenable to targeted biopsy and 7 “cross-fire” bx’s were performed in addition to the standard 12. All seven had large % PCa. Prostate volume: 78 cc.
No suspicious lymph nodes. No suspicious osseous findings.
Volume of cancer was calculated at 1.8 cc. Described as an unusual presentation of prostate cancer where it goes all the way along the ejaculatory duct.
Bx PATHOLOGY REPORT
A. Prostate, right lobe, needle biopsy: Benign prostatic tissue.
B. Prostate, left lobe, needle biopsy: Adenocarcinoma, Gleason score 3+3=6, involving <5% of the specimen (1 of 6 cores). The most affected core is involved by tumor <5% of its length. No perineural invasion or extra prostatic extension.
C. Prostate, mid-line peripheral zone, needle biopsy: Adenocarcinoma, Gleason score 3+4=7, involving 75% of the specimen (7 of 7 cores). The most affected core is involved by tumor >95% of its length. There is perineural invasion but no extra prostatic extension.
CONSULTING UROLOGIST OPINION REGARDING HYPOGONADISM: “I am a little concerned about the extensiveness of this midline cancer for focal therapy and the patient's need for hormone replacement due to symptoms. I have shared with him that I would feel more comfortable with a traditional whole gland therapy with either surgery or radiotherapy as identified and recommended by radiation oncologists before instituting hormonal replacement therapy to eugonadal levels”.
October, 2016: Laparoscopic Robotic Prostatectomy. with pelvic node dissection pT3a, pN0, pMn/a; Group Grade 2 of 5; Gleason 3+4=7;
Many large (up to 6 cm diameter) pelvic nodes removed (#24). Complicated by post op bleeding requiring 2 units of blood and one-week hospitalization. All nodes were negative for cancer.
Followed with frequent uPSA measurements over the ensuring 9 months, all of which were <0.006. T gel begun aiming for symptom improvement and T level in the 400-500 range. Frequent uPSAs (5) over subsequent 14 months all were <0.006.
During this time marked improvement in symptoms which allowed for 4 months of international travel as well as many domestic travels during this time. Symptoms and strength improved (i.e. lifting 40# luggage bags into overhead airline bins without difficulty, etc., unable to do that for several years). Also improvements in lipid profile, BMD measurement study after one year, weight loss, etc.
Immediately after returning from last two-month international travel and fifteen months after beginning T gel, lab tests revealed T of 970 and uPSA of 0.015. Stopped T gel and four weeks later T was 298 with markedly elevated LH and FSH and symptoms returning. uPSA six weeks after stopping T gel was <0.006 again. At seven weeks re-instituted T gel at one-half previous dose. Ten days later T was 461 and uPSA was 0.014. T is on hold again.
I am in uncharted territory. Reports in literature have shown PSA values of <0.03 post op seem not to progress to BCR. Can peri urethral glands be the site of this level of PSA?
If RT were to be a consideration at this point, I assume earlier is better than later.
For those of you who have hung in there and read this, I would appreciate any thoughts and I apologize if my story does not belong on this site.
PS: A further point of interest is my son who is in his mid 40’s has recently been diagnosed with hypogonadism with levels in the mid 200’s. He has begun T treatment as well.
Written by
LowT
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You, I, and a few others appear to be in an unusual “boat” in that our post-prostatectomy ultrasensitive (uPSA) levels are not following the “expected” path. Our uPSA trends up while on TRT and down when not on it. We do not “fit” current medical “models” like Dr. Morgantaler’s “saturation” model. Supposedly, men should only see their psa respond to testosterone if their T is down in the castrate range – way below ours.
In the numbered items below, please find a “trail of bread crumbs” to help you research this. But please beware you may come to a dead end and decide there is just no explanation right now. That’s where I am at, at least.
On your comment about whether your post belongs here: you and I are probably not really “advanced” PCa survivors, yet. The posters and old-timers here will be very polite and helpful, but you/I are most likely not going to die of this, whereas many other posters here are seriously (sometimes tragically) ill and need help maintaining QOL and extension of life. So I try to not chew up much bandwidth here. Below I reference the HealingWell Prostate Cancer website that you may wish to frequent. I have belonged to that one for years and it may help you, too.
(1) My case. You can click on my “Robert_san” to see my medical history. In the last year, my uPSA was trending up after running in the mid .020’s for several years. At my uro appt. Dec 2018, I decided to stop the testosterone injections I was on. My uPSA has started to trend down. Awaiting next test Mar 4.
My 2018 readings:
2018/01/12: uPSA = .026
2018/06/15: uPSA = .029
2018/08/22: uPSA = .030
2018/11/02: uPSA = .034
2018-11-30 was last T injection – have not taken it since
2018/11/30: uPSA = .048
2018/12/07: uPSA = .052
2018-12-07 T = 750 mid-point 14-day injection cycle
2019/01/02: uPSA = .041
2019/02/04: uPSA = .036
I went off the T injections for six months in 2017 and saw the same downward uPSA trend. When I restarted the shots, my uPSA started trending up again. This time, I am staying off the TRT forever. Not fun, but thought it best. My decision, not uro's.
(2) A good discussion on this web site:
Use the Search HealthUnlocked feature at top of screen and search for “Androgel to re-activate”. Find the thread “Prostate Cancer and using Androgel to Re-activate Testosterone Levels”. In that thread, find the back and forth between “dave2” and “Robert_san” from late Jan., 2019. Dave2 helped me understand a lot. Therein, I reference several medical research articles you may find somewhat helpful to read. But, again, nobody has a good handle on why this uPSA roller-coaster happens. “LowT”, if you ever get a clear answer, please post it here.
(3) Many discussions about TRT and PSA on the HealingWell Prostate website.
Do not remember if you have to join to use its search feature. Anyway, in the top right corner of that website’s screen, use the Custom Search entry and use search phrases like “testosterone + psa” or “testosterone + uPSA”, etc. You will find a lot of discussions on this topic. If you see a thread “Almost got to 5 years” by “Bobbiesan”, that’s mine. You see I’ve been wrestling this a few years.
"LowT", if you ever get good info on why these psa’s are responding to TRT in a roller-coaster manner, it would be nice of you to post here or elsewhere. Some men may be trying to decide whether to proceed with SRT and such info may help them if they are currently on TRT. Maybe those men will still decide to proceed to SRT at low levels of uPSA. But maybe they can hold off a while if their uPSA was rising mainly due to TRT and they can stand going off TRT.
Thanks for your post. I tend to believe our "boat" may not be so small. I have a spreadsheet of essentially all my lab results and will post here later after summarizing in attempt to make some sense out of them. These include PSAs, uPSAs, T levels, estradiol, DHEA, LH, FSH, Vit D, etc., including correlation with various events. Its complicated!!
Before surgery I had a trial of Clomid which produced dramatic physical and laboratory results but I stopped it after 6 wks due to visual SE and marked rise in PSA, which led to Bx and surgery.
9 months after surgery (and neg uPSAs) I elected to use T gel so as to avoid T spikes with injections (if that makes a difference?) and frequent monitoring of T levels and uPSA. Wanting to keep in 400 area but more importantly symptom monitoring. I also am hypothyroid and on Rx for this.
Another interesting discovery I have had is the variability of absorption/T levels. My T rose to 970 after changing T gel brands (due to Rx insurance), site of application variance, traveling with lack of daily showers, layers of clothing, climate, etc. (U.S.A. Israel and Norway before drawing next T level) As I said it's complicated!!
Please forgive the length and degree of detail but as they say, “Its complicated”.
MY HISTORY
Current age: 77
I consider my current health status excellent while receiving Tx for hypothyroidism, LOH, PCa and PAF controlled by antiarrhythmic and K and Mg supplements. No family hx of cancer.
Many years history of progressive worsening low testosterone signs and symptoms, beginning ~20 years ago. First recorded Testosterone was 336 in 2006. In 2009 it was 285 and 2010 was 263. In 2012, 2013, & 2014 values were in low 300’s. In 2015 it was 286.
PSA VALUES
1992 first measured PSA 0.9
1996: 1.0
2002: 1.33
2006: 1.7
2006: 1.9
2009: 2.5
2010: 2.63
2011: 4.51 90-day ATB tx prostatitis
2012: 4.1; 4.2; 3.9: & 4.36
2013: 4.1 & 3.5
2014: 3.9
2015: 4.92
Numerous DRE over the years by many different doctors was normal without nodules.
In 2013: Began levothyroxine after many years of “sub-clinical” hypothyroidism and repeated requests to do something for my progressive symptoms even though my TSH had not reached 10.
2015: First studies re: gonad endo eval showed high FSH and LH with T of 286 & free T 7.4 (both low). Doctors reluctant to Rx T but agreed to trial Clomid because of worsening symptoms.
2016: 6.82 after 6 wks Clomiphene. (Symptoms showed improvement but on Clomid but stopped due to visual side effects and PSA increase.)
On my own I began DHEA and VitD as these levels had been very low as well.
PSA peaked at 8.6 from Clomid and then began falling after stopping it. I had anticipated some increase but not of this magnitude.
During these years, Bx was suggested on at least two occasions, which was declined.
April 2016: BMD scan revealed osteopenia.
April 2016: MRI revealed 3 x normal gland size. (78gm). Somewhat relieved thinking perhaps PSAs were from large gland. However, from what I could glean from literature, PSA increase is typically less than 1 with Clomiphene.
March 2016: MRI of prostate: Initial interpretation:
• The prostate measures 5.9 x 5.1 x 5.1 cm, which corresponds to a volume of 78 g and a PSA density of 0.1 ng/mL/g.
• A 1 x 0.7 cm right medial mid transition zone lesion is indeterminate (PI RADS 3 = Indeterminate ). This lesion does not show early enhancement relative to the remainder of the prostate on dynamic contrast-enhanced sequences.
• Benign prostatic hypertrophy within the transition zone and foci of chronic prostatitis within the peripheral zone (PI RADS 2 = Low likelihood of clinically significant cancer).
• The central zone is unremarkable.
I downloaded images through patient portal and was concerned about area anterior to rectum as capsule in that area was less distinct and perhaps bowing.
June 2016: Since I had been referred for consultation regarding my hypothyroidism and hypogonadism, I sent the disk to Mayo for a second interpretation. They felt the study showed highly suspicious lesion and Bx was scheduled one month later.
[[Subsequent interpretation of local MRI study by different radiologist: In addition to the findings within the original report, there is a 1.3 x 0.8 cm well-circumscribed low T2 signal mass within the right base medial peripheral zone (series 7 image 19). This lesion is low in signal on the ADC images and high in signal on diffusion. It demonstrates early arterial enhancement. There is a broad base of contact with the capsule. There is some bowing of the capsule which could indicate extra-prostatic extension. PIRADS 4-5. The patient reports that he is scheduled for follow-up MRI and prostate biopsy.]]
JULY 2016: I had become aware of intermittent tenesmus type feelings along with dull rectal discomfort. Thinking if I had cancer and it was invading capsule the neuro plexus around rectum may be irritated and thus causing this feeling. The colonoscopy was essentially normal.
8/10/2016: Because of the unusual location and the consideration this might be an uncommon variant, the Bx included 7 “cross fire” Bx’s.
Repeat MRI PROSTATE followed by Bx: MRI IMPRESSION: Significant prostate cancer is likely to be present. This may be amenable to targeted biopsy and 7 “cross-fire” bx’s were performed in addition to the standard 12. All seven had large % PCa. Prostate volume: 78 cc. Triangular lesion on T2-weighted imaging posteriorly in the midline extending from the base down to the mid gland demonstrates marked restricted diffusion. This can be seen as an uncommon variant of extension of central zone and/or posterior midline fibrosis. However, there is also markedly abnormal hyper-enhancement with this, which is very atypical for either of those benign differential considerations.
No extra prostatic extension, seminal vesicle invasion, or neurovascular bundle involvement.
No suspicious lymph nodes. No suspicious osseous findings.
Volume of cancer was calculated at 1.8 cc. (I was told greater than 1.6 cc increases likelihood of capsule invasion.) This was described as an unusual presentation of prostate cancer where it goes all the way along the ejaculatory duct.
PROSTATE Bx PATHOLOGY REPORT
A. Prostate, right lobe, needle biopsy: Benign prostatic tissue.
B. Prostate, left lobe, needle biopsy: Adenocarcinoma, Gleason score 3+3=6, involving <5% of the specimen (1 of 6 cores). The most affected core is involved by tumor <5% of its length. No perineural invasion or extra prostatic extension.
C. Prostate, mid-line peripheral zone, needle biopsy: Adenocarcinoma, Gleason score 3+4=7, involving 75% of the specimen (7 of 7 cores). The most affected core is involved by tumor >95% of its length. There is perineural invasion but no extra prostatic extension.
CONSULTING UROLOGIST OPINION REGARDING THE HYPOGONADISM: “I am a little concerned about the extensiveness of this midline cancer for focal therapy and the patient's need for hormone replacement due to symptoms. I have shared with him that I would feel more comfortable with a traditional whole gland therapy with either surgery or radiotherapy as identified and recommended by radiation oncologists before instituting hormonal replacement therapy to eugonadal levels”.
October, 2016: Laparoscopic Robotic Prostatectomy. with pelvic node dissection performed locally pT3a, pN0, pMn/a; Group Grade 2 of 5; Gleason 3+4=7;
Many large (up to 6 cm diameter) pelvic nodes removed (#24). Complicated by post op bleeding requiring 2 units of blood and one-week hospitalization. All nodes were negative for cancer.
Followed with frequent uPSA measurements over the ensuring 9 months, all of which were <0.006. T gel was begun July 2017 aiming for T level in the 400-500 range.
Frequent uPSAs (5) over subsequent 14 months all were <0.006.
During this time marked improvement in symptoms and allowed for 4 months of international travel as well as many domestic travels during this time. Strength improved as measured by many objective measurements including lifting 40# luggage bags into overhead airline bins without difficulty. Unable to do that for several years. Impressive improvements in lipid profile and improved BMD measurement study after one year, weight loss, etc.
Last year after one month of beginning T gel the DHEA went from 16 to 647!! At this point I stopped the DHEA and did not resume it until a few weeks ago as I had stopped the T gel a month before that due to the high T and uPSA of 0.015. DHEA blood levels were low during entire last year while on the T gel. After stopping the T gel in December, I began taking the DHEA again. When uPSA returned <0.006 I began T gel at half dose. Ten days later the DHEA went from 11 to 215 and uPSA was 0.014. T went from 298 to 461. A correlation of using T and DHEA together resulted on two occasions in dramatic increase in my DHEA!!! No one seems to have an explanation.
Immediately after returning from last two-month international travel and fifteen months after beginning T gel, lab tests revealed T of 970 and uPSA of 0.015. Stopped T gel and four weeks later T was 298 with elevated LH and FSH as in the past and symptoms returning. uPSA six weeks after stopping T gel was <0.006 again. At seven weeks re-instituted T gel at one-half previous dose. Ten days later T was 461 and uPSA was 0.014. T is on hold again.
Studies have shown PSA values of <0.03 post op seem not to progress to BCR. Can peri urethral glands be the site of this level of PSA? Are there any other sources of PSA and could urinary PSA be helpful??
I also wonder if all those years of untreated subclinical hypothyroid may have contribute to a slow growth of my Pca.
I you have read this far you can see it’s complicated and I hope I have included all pertinent info.
That’s a pretty detailed history! Personally, I would concentrate more on the post-surgery path, as our biopsies and MRIs before that are water under the bridge now.
(1)
On your surgery path, with the pT3a capsule penetration, did the path write-up mention that margins were clear? If there were margins+, did the pathologist note the gleason at the margin(s)? Was there any of your “4” in gleason 3+4=7 found at margin? I’m wondering if there was/is any prostate tissue remaining in you that might, over time, be influenced by the TRT, though “saturation model” implies it should not be so influenced. I had a margin+ (Epstein 2nd path said 3+3=6) and wonder if that’s part of my situation. Still cancer, but kinda indolent.
With your 78g prostate, perhaps some benign tissue remnants were left around the surgical area? Dr. Myers said even the best surgeon may leave a little.
Did you get a second path after surgery? If so, did it match the first pretty well?
(2)
Do you also have lab history for DHT and estradiol for the post-surgery period? Were any of those readings out of normal range for each test?
Also, while on TRT, were you also taking an aromatase inhibitor (AI) or 5a-Reductase inhibitor?
(3)
Just a housekeeping question: Looking across the blood draws for your post-prostatectomy uPSAs, were they at about same time of day, about same body hydration levels (esp. considering your travel!), and did you abstain for 72 hrs from B7 (biotin) found in many multi-vitamin pills?:
Guess if you wanted a urPSA, and it showed high, and you have pattern hair loss, you might be the type of patient those authors seem to be hypothesizing have higher post-surgery uPSA due to DHT activity “in tar-get tissues, i.e. in the PSA-secreting urethral glands and the scalp.”
Esp. if you tracked DHT while on TRT and it went high.
(5) As for hypothyroidism, don’t know, but I, too, was so diagnosed a couple years before my RALP, and I’ve been on levothyroxine since. Interesting question. If so linked, wish I had been diagnosed on that even earlier and known to look out for PCa coming down the pike.
• Surgical margins were clear. (“Resection margins are negative”)
• Path was read by Johns Hopkins trained pathologist. Did not get a second reading.
• Have taken a Super B-complex vitamin for many years (includes 30 mcg biotin)
• DHT has never been measured. Needs to be.
• Only one estradiol has been measured while I was not receiving Tgel or Clomid and it was 10.9 (very low end of reference range). It was 25 on clomiphene which was stopped after 6 weeks due to severe visual SE; 22 & 19 while on the Tgel (T’s in the 400-600 range); 35 when T was 970; falling to 31 one month after stopping the Tgel.
• Never used aromatase inhibitor or 5a-reductase inhibitor
• Blood draws have always been in morning (between 7:30 & 9:30 am)
• Yes, I have male pattern baldness (that’s the type where I think I’m a lover, right?!)
• DHT has not been measured.
• DHEA went sky high when receiving both TRT and oral DHEA (two occasions). but otherwise low while on DHEA only, or on TRT only. I stopped the DHEA while I was on TRT because of this. Any thoughts on this?
Other observation: I have practiced body grooming the last several years but during last two-month travel (when my T was apparently rising) I began looking like the Woolly Monster with marked body hair growth including fuzzy hair appearing on my bald scalp.
Just received my uPSA from Mar 7th. It is 0.007 one month after stopping Tgel. T level drawn at the same time was 420. Awaiting other hormone test results. The last four uPSA values in series have been 0.015; <0.006; 0.014; and now 0.007.
That is good news. Seems your uPSA remains lower than the .03 level that becomes "worrisome" to some doctors if it keeps climbing above .03 -- and for you, it is lower than that whether you are on or off TRT. I'll bet you are wondering about whether it is safe to continue with TRT, right? Me, too. I am off the juice, probably permanently, but I had been running much "hotter" on uPSA than you.
Another guy, Dave, and I have been discussing topics around this in another thread,
Greetings LowT Thank you for all your information but can you please tell us a bit more?
We know your age, can you tell us where you're located, being treated and doctor(s) names(s). This info helps us help you. Hope your Son's treatments are successful.
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Active Surveillance Is Over For Me
