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Posted 7/27/2023 7:27 PM (GMT 0)
Hi all. I apologize as I am sure everyone here has read a million of these stories and questions. At 52 I have had to have a prostectomy. It has now been about 10 weeks since surgery. It had been removed but my doctor seems to not want to talk a lot about the pathology or what I’m feeling. My surgery was done at Memorial Sloan Kettering. I asked about positive surgical margins of 3mm and was told there is nothing to be concerned about with that. I can’t help but research and find contradictory information. My post op PSA was .05 and I was told this is considered non existent by his standards. The assay shows a range of 0.00 ng/mL - 4.00 ng/mL. .0.05 doesn’t seem to be non existent. I wouldn’t mind hearing from others as to whether or not this makes sense? I am worried. I just can’t help it. I have rectal pain at times and more when I orgasm and pain in my penis/testicles at various times. I do still have ED but we are working on that. I also have a white ring around the head of my penis that looks like lack of blood flow. Sorry for the personal info overload. Ha. I guess I am hoping hearing if others have had similar questions or situations it may help me relax a little. At 52 I don’t want to take many chances on it coming back or spreading. Thank you.
Posted 7/27/2023 8:42 PM (GMT 0)
Your urologist sounds a like my urologist, not much talking. You have to remember urologists are surgeons, they love to cut but many don't have the best bedside manners. Your post-op PSA is considered undetectable when using standard (Quest labs) PSA tests which test to 0.1 ng/ml, but using one of the ultra-sensitive PSA tests like Quest Labs which test down to 0.02 ng/ml it is detectable. I can tell you not to worry, but you still will. Continue with PSA tests (I have been doing PSA tests (Quest Labs sensitive post-prostatectomy PSA test) every six months. If the PSA starts to increase then you deal with it, until then enjoy life!!!!

I too had a positive margin of about 2mm square, and my doctor told me not to worry about it. Well after two years it showed its ugly head when my PSA became detectable at 0.1 ng/ml (standard PSA test) requiring me to undergo radiation treatment. Luckily, I never experience ED but do have very minor stress incontinence when lifting very heavy objects. It has been 8 years since my radiation treatment, and again I can say I never experience any urinary or gastric problems.

As for the rectal pain, 10 weeks is still very early and recovery will take some time to get back to normal.
Posted 7/27/2023 9:36 PM (GMT 0)
Thank you lapilot. I really appreciate the info. The only info on the post op PSA states that it was EIA, Beckman Access DxI. and the range was from 0.00 to 4.00. I’m sure he is trying to just keep me from worrying and as a surgeon maybe doesn’t want to talk an about positive surgical margins. I am the type that needs straight true answers so I can process it and move on. Along with needing it so I trust my doctor. He is amazing and not a huge proponent for surgery unless it’s necessary and that’s why I went with him. I had very little incontinance and need just a pad for one small leak a day. I am fortunate there. The ED is definitely more of an issue. Meds haven’t done much yet but it’s still early. Hopefully that changes. I am sure I will get used to all of these changes with time. Hopefully it stays away and if it doesn’t I guess I just have to deal with it then. Thank you again.
Posted 7/27/2023 10:18 PM (GMT 0)
For the time being, I would say that all is good. Whether your 'margins' were 2 mm or 3 mm isn't going to determine the long-term outcome (see lapilot's response). The early PSA test outcome is promising and I hope that you will have many very low or 'nondetectable' PSA tests in the years to come.
PS: I hate 'undetectable/nondetectable' because it all depends on the test that was used. There are many threads on that subject on this forum.

Post Edited (Sr Sailor) : 7/28/2023 8:50:02 AM (GMT-8)

Posted 7/28/2023 2:18 AM (GMT 0)
Hello Mark - Prostate surgery is a difficult operation in a sensitive congested area so there are odd aches and pains that seem to hang in there for a while, at least they did for me. Hopefully you are past the worst of it and it will slowly get better. There is an increased chance of hernia after surgery so don’t ignore everything you feel but be cautious and see your doctors when necessary.

The post-op pathology does not tell you anything for sure, it is just a summary of observations by the pathologist. However, there have been hundreds of studies that have statistically connected certain items to an increased risk of recurrence. Positive margin is just one of those items. Do you have a copy of your pathology report? The exact wording of the report is important to decipher.

I am not a fan of doctor’s obtaining a PSA result prior to 12 weeks (3 mos) as they will always say we need to wait until the next test. Regardless of what happens, you will be monitoring your PSA for a long time to establish a trend, if any. If your PSA is not non-detectable (sensitivity limit of test, not zero) and/or stable, salvage radiation would be considered at some point. The toughest part is you can’t hurry this process up. Test, wait for results, then wait for the next test, repeat. Your next PSA should give a better idea of what is going on so you wait…
Posted 7/28/2023 2:35 AM (GMT 0)

Sr Sailor said...
For the time being, I would say that all is good. Whether your 'margins' were 2 mm or 3 mm isn't going to determine the long-term outcome (see lapilot's response). The early PSA test outcome is promising and I hope that you will have many very low or 'nondetectable' PSA tests in the years to come.
PS: I hate 'undetectable' because it all depends on the test that was used. There are many threads on this subject on this forum.

Thank you! I appreciate the response. I’m sure with time and hopefully many good test results I will calm and learn to roll with this new ride I’m on.
Posted 7/28/2023 4:01 AM (GMT 0)
Thank you Mumbo. I do have the pathology report. Is there something special should look for? Overall I think it was good. Positive surgical margins was the most concerning. I will definitely look forward to my next PSA. I am hopeful that all will be well. I think a big part of my anxiety comes from how this all came about. I live in a very rural NY farming community that lacks medical services. My primary noticed gradually rising PSAs and referred me to to a urologist that was from the next larger area. He didn’t agree with her and did another PSA. It went ups again and he recommended biopsies. They were done and were rated as a Gleason 6 and I was told it was slow growing low risk. I was having decreased flow and mild ED with mixed pain and bleeding. They recommended surveillance and refused to do an MRI. I agreed but after a couple months of continuous symptoms I decided to call Memorial Sloan Kettering and ask their opinion. They got me in immediately and re read the biopsy. They determined it was misread and gave me the 3+4, did a digital exam and an MRI. They told me they could feel a hardness and odd texture at the base of my prostate. My local doctors never felt anything. The MRI showed a tumor that snaked under my urethra and was mostly missed by the biopsies. The MRI results read “ LESION 1
* PI-RADS v2.1 Score: 5
* Size: 1.7 cm
* location: Bilateral, posterior, base to apex, peripheral zone
* Extracapsular extension: Capsular contact without definite extracapsular extension.
* Seminal vesicle invasion: None.
* Adjacent organ invasion: None.
PELVIC LYMPH NODES:
BONES: lesion.
OTHER:
No adenopathy.
None.
No suspicious osseous
IMPRESSION:
1. Posterior midline base to apex peripheral zone lesion which is suspicious for tumor. PI-RADS v2.1 score: 5.
For PI-RADS v2.1, clinically significant cancer is defined on pathology/histology as Gleason score >=7 (including 3+4), and/or volume >=0.5 cc, and/or extra prostatic extension (EPE). PI-RADSv2.1 does not include recommendations for management, as these must take into account other factors besides the MRI findings. https://doi.org/10.1016/j.eururo.2019.02.033
PI-RADS v2.1 Assessment Categories
1 - Very low (clinically significant cancer is highly unlikely to be present)
2 - Low (clinically significant cancer is unlikely to be present)
3 - Intermediate (the presence of clinically significant cancer is equivocal)
4 - High 5 - Very present)
Dictated
Staff Radiologist: JOSHUA CHAIM, DO
I attest that the above IMPRESSION is based upon my personal examination of the entire imaging study and that I have reviewed and approved this report.
(clinically significant cancer is likely to be present) high (clinically significant cancer is highly likely to be present)
FINAL REPORT
By: JOSHUA CHAIM, DO
Name: Mark MRN: 38260556”

After reading the MRI results my surgeon (Adae Baffar) advised me that he would not recommend surveillance and gave me my options. I chose to have the prostate removed. He did the surgery and said he spared 90% of my nerves and did not remove my lymph nodes. The pathology report is as follows:

DIAGNOSIS:
1. Anterior apex question prostate tissue (fsjr):
Benign fibromuscular tissue, no prostatic glands present
2. Periprostatic fat:
Benign adipose tissue
3. Prostate and seminal vesicles: Procedure:
Radical Prostatectomy Tumor Type:
Adenocarcinoma Histologic Grade:
Primary Gleason pattern: 3 Secondary Gleason pattern: 4 Total Gleason score: 7
Grade Group: 2
The amount of Gleason pattern 4 is approximately 15 % Intraductal Carcinoma:
Not identified
Cribriform Glands (applicable to Gleason score 7 or 8 cancer only):
Not identified Tumor location:
Involves right posterior
Involves left posterior
Dominant tumor mass located in: right/left posterior apex to mid
Tumor Multifocality: Not identified
Tumor Quantifications:
Percentage of prostate involved by tumor: 5% Tumor size (greatest dimension in mm): 22 mm
Presence of Extraprostatic Extension (EPE): Tumor confined to prostate
Seminal Vesicle Involvement:
Page 1 of 4

PATHOLOGY REPORT S23-37168 38260556
Not identified
Bladder Neck Involvement:
Not involved
Surgical Margin Involvement:
Involved by tumor, limited (<3mm)
Tumor focally present at left posterior mid margin Treatment Effect:
Not identified Lymphovascular Invasion:
Not identified Perineural Invasion:
Identified
High Grade Prostatic Intraepithelial Neoplasia (HGPIN):
Not identified Non-neoplastic Prostate Tissue:
Unremarkable
Pathologic Stage Classification (AJCC 8th Edition) Primary Tumor (pT):
pT2: Organ-confined Regional Lymph Nodes (pN):
pNX: Regional lymph node cannot be assessed Distant Metastasis (pM):
pMx
TNM descriptors:
N/A
I ATTEST THAT THE ABOVE DIAGNOSIS IS BASED UPON MY PERSONAL EXAMINATION OF THE SLIDES (AND/OR OTHER MATERIAL), AND THAT I HAVE REVIEWED AND APPROVED THIS REPORT.
Gross Description:
Anuradha Gopalan, M.D./FZM
*** Report Electronically Signed Out *** 13:58
Kelly Baxter, P.A.
1) Received fresh for intraoperative consultation labeled "Anterior apex question prostate tissue" is a 0.2 x 0.1 x 0.1 cm fragment of tan-red soft tissue, which is submitted in total for frozen section.
Summary of sections:
FSC - frozen section control
Kelly Baxter, P.A.
2) Received fresh labeled “Periprostatic fat” is a 4.3 x 2.8 x 0.7 cm aggregate of yellow lobulated adipose tissue. No abnormalities are noted. Representative sections are submitted.
Summary of sections: F - fat
Page 2 of 4
PATHOLOGY REPORT S23-37168 38260556
Richard Clarke, H.T.
3) The specimen is received fresh from overnight, labeled "Prostate and seminal vesicles". It consists of prostate and seminal vesicles. The total weight is 41.0 grams. The prostate measures 3.3 cm from apex to base, 4.5 cm transversely, and 3.5 cm from anterior to posterior. The right and left seminal vesicles measure 3.5 x 1.8 and 0.5 x 2.0 cm, respectively. The external surface of the prostate is smooth. The prostate is inked (right = green and left = blue). The prostate is serially cut from apex to base at approximately 3-4 mm intervals. The prostate is fixed overnight in formalin and is entirely submitted.
Summary of Sections:
BN - bladder neck margin
RA - right apical margin
LA - left apical margin
RSV - right seminal vesicle
LSV - left seminal vesicle
A -H -serial sections of prostate (apex to base)
Note: Specimen(s) collected and prosected at MSKCC Pathology at Josie Robertson, 1133 York Ave, New York, NY 10065. Histology processing, staining and immunohistochemistry procedures performed at Memorial Hospital for Cancer and Allied Diseases - Dept of Pathology, 1275 York Ave, New York, NY 10065.
Summary of Sections:
Part 1: Anterior apex question prostate tissue (fsjr)
Blocks Block Designation PCs
1FSC 1
Part 2: Periprostatic fat
Blocks Block Designation PCs
1F1
Part 3: Prostate and seminal vesicles
Blocks Block Designation PCs
1A1 1B1 1BN 1 1C1 1D1 1E1 1F1 1G1 1H1 1LA 1 1LSV 1 1RA 1 1RSV 1
Intraoperative Consultation:
Note: The diagnoses given in this section pertain only to the tissue sample examined at the time of the intraoperative consultation.
1. Anterior apex question prostate tissue (fsjr): Benign. No prostatic glands (WEN) PERMANENT DIAGNOSIS: Same
Page 3 of 4
MARK SURGICAL PATHOLOGY REPORT S23-37168 38260556
Note: Specimen(s) collected, prosected and intraoperative consultation provided at MSKCC Pathology at Josie Robertson, 1133 York Ave, New York, NY 10065. yhw/5/15/2023 Hannah Yong Wen, M.D., Ph.D. Slides may have been examined as digital images for intraoperative frozen and software for digital images have been by Leica Philips, and MSK. Their have been by the MSK of It has not been cleared or by the U.S. Food and Drug (FDA). This test has been granted by New York State as a test. This test is used for clinical to the of CLIA ’88, our laboratory has the and non-inferiority

I have been on pins and needles since the start of all of this and could tell my local doctors were missing something. I think that feeling is still with me and hopefully it leaves soon. I apologize for the info overload but wanted to give you the full picture. Thank you all once again.
Posted 7/28/2023 8:45 AM (GMT 0)
It is just the 8 week report. Wait to the 3 months test to have a better idea of what is going on.
The meaning of the result depends on the laboratory. Most labs give a < before the figure to indicate that psa it is undetectable, that is what you want to see, but a few, like mine, not in the US, just give the raw reading.
Posted 7/28/2023 8:52 AM (GMT 0)
It is just the 8 week report. Wait to the 3 months test to have a better idea of what is going on.
The meaning of the result depends on the laboratory. Most labs give a < before the figure to indicate that psa it is undetectable, that is what you want to see, but a few, like mine, not in the US, it just gives the raw reading.
Posted 7/28/2023 9:09 AM (GMT 0)
Mark, welcome,

As others have said, the key PSA value will be at 3 months post surgery. PSA has 'half-life', in that it breaks down in your body over time, and it takes a while. The 0.05 is good, it's moving in the right direction, and what you're looking for is a "<" in front of the reading. This simply means that the reading is lower than the smallest mark on the measuring stick.

You pathology report doesn't have anything alarming on it. Basically it says that you had one main tumor, involving around 5% of the gland, with a final gleason score of 7. Very similar to mine, and I've been undetectable for 81/2 years.

The key, now, is to focus on your overall recovery. The surgery takes a lot out of you. I recall realizing that I really didn't feel 'myself' for at least 6 months. Odd pains, general weariness, and so on, lingered for a while. You made a comment about orgasms-that's good! So it sounds like things are at least somewhat functional along those lines. Did your doc give you a scrip for either viagra or cialis? If not, it helps, not only with function but also by stimulating blood flow through your pelvic area which is good for complete healing. How are you doing for continence? Are you able to hold your pee? One thing I figured out early--and it's just habit now--is that the time lag between "I need to go soon" and "I need to go NOW" is a lot shorter than it used to be.

So, I suggest keep exercising--walking is really good. Eat healthy. Take naps when needed. Get your life going again. You dodged the PC bullet for now. If your next PSA still has a little there, they might (MIGHT) need to give you a few zaps of radiation to wipe out the missing cells. But, don't worry about that yet.

You're doing great!
Posted 7/28/2023 11:10 AM (GMT 0)

jmadrid said...
It is just the 8 week report. Wait to the 3 months test to have a better idea of what is going on.
The meaning of the result depends on the laboratory. Most labs give a < before the figure to indicate that psa it is undetectable, that is what you want to see, but a few, like mine, not in the US, just give the raw reading.

Thank you jmadrid. It is good to hear that I am jumping the gun a little. My PSA test from the cancer center did not use the < symbol in the 8 week PSA but I will wait for the next one. Thank you again and I hope you all stay healthy.
Posted 7/28/2023 11:37 AM (GMT 0)

halbert said...
Mark, welcome,

As others have said, the key PSA value will be at 3 months post surgery. PSA has 'half-life', in that it breaks down in your body over time, and it takes a while. The 0.05 is good, it's moving in the right direction, and what you're looking for is a "<" in front of the reading. This simply means that the reading is lower than the smallest mark on the measuring stick.

You pathology report doesn't have anything alarming on it. Basically it says that you had one main tumor, involving around 5% of the gland, with a final gleason score of 7. Very similar to mine, and I've been undetectable for 81/2 years.

The key, now, is to focus on your overall recovery. The surgery takes a lot out of you. I recall realizing that I really didn't feel 'myself' for at least 6 months. Odd pains, general weariness, and so on, lingered for a while. You made a comment about orgasms-that's good! So it sounds like things are at least somewhat functional along those lines. Did your doc give you a scrip for either viagra or cialis? If not, it helps, not only with function but also by stimulating blood flow through your pelvic area which is good for complete healing. How are you doing for continence? Are you able to hold your pee? One thing I figured out early--and it's just habit now--is that the time lag between "I need to go soon" and "I need to go NOW" is a lot shorter than it used to be.

So, I suggest keep exercising--walking is really good. Eat healthy. Take naps when needed. Get your life going again. You dodged the PC bullet for now. If your next PSA still has a little there, they might (MIGHT) need to give you a few zaps of radiation to wipe out the missing cells. But, don't worry about that yet.

You're doing great!

Thank you Halbert! I can’t that you all enough. It helps a lot hearing from so many with similar situations. My surgeon said that he doesn’t need another PSA for six months. Sometime in December. I will do my best to not worry and keep moving forward. I have been getting myself back to my normal routines and I am very happy to be able to get back to working in the woods and finishing some building projects. They did give me Cialis and I have been following their regiment. It has brought back a little bit of an erection but not enough for intercourse just yet. I was remarried the year before my diagnosis so that is something I am working on and am hopeful I’ll get things back to normal. I have an appointment at the end of August with their sexual wellness team. I am sure they will help me along. I am so fortunate when it comes to incontinence. I leak very little. One pad a day. I did several weeks of pre surgery kegels and I think it paid off. I still have to think a bit about holding it but not bad at all. I no longer leak at night. I definitely notice the same as you described. I go every couple of hours and know if I try to let it go to long I may start in the pad. My flow is amazing. Haha. I never knew that it was so restricted. My surgeon was very surprised about how little I leak and said I’m way ahead of the game in that regard. I will keep moving and wait for the next PSA. Thank you again for helping to put my mind at ease.
Posted 7/28/2023 12:47 PM (GMT 0)
At 10 weeks with a PSA of 0.05 I would be very concerned. There are several studies that support my post.

https://prostatecancerinfolink.net/2015/09/12/johns-hopkins-ultrasensitive-psa-after-surgery-predicts-biochemical-relapse/
Posted 7/28/2023 1:54 PM (GMT 0)
Thank you Duck2 for the input. I’ll definitely be vigilant and keep up with the screenings. Not much choice. Going to focus on keeping moving forward in between those months.
Posted 7/28/2023 2:18 PM (GMT 0)
Mark - First things first, above JH study is based on 3 month PSA results which you don't have yet. The important part is to not worry about things that you cannot do anything about. Fear of the known is one thing, fear of the unknown is the source of endless mind games and despair.

Your "story" is wonderful and exactly how it should work. Small town America is generally not the place to get treatment for more complicated medical issues and you worked your way up to one of the top cancer centers in the US for evaluation and treatment. You should be happy that you did the right things and your intuition was correct.

One thing you need to do is change your signature to "SM (surgical margin) < 3mm" which is similar to the "<" sign used with PSA readings. Your surgical positive margin could have been 0.5 mm but the standard criteria for reporting is <3mm vs greater than that if there is a positive surgical margin noted. This is based on statistical significance of a small incursion vs. larger one.

The cancer was confined to the prostate and the prostate got nicked in the removal process, probably in one of the difficult areas. With most cancers, surgeons leave a large margin around the tumor to be safe, there is little room around the prostate in some areas without hitting something important so tight margins are common.

Only 5% of prostate involvement of a 41g prostate is a good starting spot of which 15% was Pattern 4.
Posted 7/28/2023 2:49 PM (GMT 0)
Thank you once again Mumbo. I did read the study and saw right away that it didn’t really apply to me. I will wait for the next one and go from there.

I appreciate the support and positivity. I updated my signature. I did ask my surgeon and he advised that it would be between 3mm and 2mm. If it was <2mm it would say that instead. He still agreed with most others that yes it’s something that could up the chances or recurrence but he doesn’t worry about that unless it happens. I get that. I just have to get past it. I will. I’m sure of it. Time and mindset.

I am very thankful that I went with my gut instincts about my local diagnosis and went for the second opinion. NYC told me that I was smart and that waiting could have made things much worse. They were concerned about ECE from the MRI but were glad to see there were no true issues. All of your comments about my pathology make sense and help to ease the mind a bit. My mind is definitely my worst enemy. As time passes and the PSAs stay down I am confident I will be able rest easier. Part of my angst is that my grand father and father both had PC but late in life and died of other issues before anything could be done about the PC. Grandfather was liver cancer (76) and father was lung and heart issues (76). Daf was a heavy smokey. Grandpa wasn’t a drinker or anything. My grandmother died of bone cancer in her early 60s. Hopefully this is all I face until I’m old and grayer. Haha.

Memorial Sloan Kettering asked if I’d be part of a genetic testing study. I did it and they told me they found no markers in my genetics consistent with any possible cancers. Not even prostate. Haha. Not sure how good the study is working but hey I wanted to see. Thank you again and I’ll be around the group for a long time and will post any updates and look forward to reading everyone else’s.
Posted 7/28/2023 3:15 PM (GMT 0)
Hi Mark, To echo other posts, I think you did the right thing going to a major cancer center such as MSK. I had surgery in upstate NY in ‘09, but it was clear by summer of ‘11 that surgery had failed. Twelve years later I am still here. Gleason 8. I would not be too concerned about PSA at this moment. Monitor the trend. It will become clear soon enough. I did not go to MSK expecting miracles, but for several reasons: one stop shopping for all cancer related services, top notch practitioners and scientist/physicians at the Kimmel Center who focus solely on prostate cancer, a deep bench should a practitioner retire, and more ready access to clinical trials. If your PSA rises (hopefully not) you can easily move into Medical Oncology or Radiation at MSK. Top people in my experience. As for the ED issue, that is very hard at your age, especially. I was at the classic age of mid ‘60s when diagnosed, and was never able to regain that function. You have youth on your side, however. Wishing you well… Bill
Posted 7/28/2023 3:55 PM (GMT 0)
I had genetic testing and it was negative for the common PCa factors in 2019. The good thing is there is nothing special to warn brothers and sons about other than family history in general. The bad thing is there is nothing to hang the cause on so you still wonder, why me? what could I have done?

ED is a longer range issue compared to incontinence. From the statistics my urologist provided me in 2018 which was based on their experience, most men (77%) regained continence within 3 mos and 95% by 12 months (no pads). Whereas, ED recovery was more like 50% at three months, 75% at 12 months. Needless to say the good ED results are skewed towards younger men and older men tend to have urinary issues to start with so quite a mixed bag for comparisons. Hopefully, MSK will guide you with medication, vacuum pump, and so regarding your ED recovery.

I posted after my surgery about lingering aches and pains asking the question about long do the effects of surgery last and when will I feel back to normal? The answers ranged from 3 months to never with 6-12 months being common as I recall. PCa is the long game for sure.
Posted 7/28/2023 4:21 PM (GMT 0)
Hey Bill. Thank you. Good to know I’m not the only Northern NYer that has sub par medical facilities. I’m glad you chose MSK. Many in my area go to Burlington VT but they seem to be having many mor issues than I. MSK is a great place and I will see their sexual wellness group in about four weeks. Hopefully they can help me a bit. I am definitely going to stick with them no matter what happens from here. It’s about a 7 hr trip one way for us but worth it I think. We take the train from Albany. I will gradually calm and just wait to see what the PSAs do. I’m sorry you have had to keep dealing with it all. I am sorry for all of us. I wish none of us ever got it. Take care and than you.
Posted 7/28/2023 4:57 PM (GMT 0)
"The assay shows a range of 0.00 ng/mL - 4.00 ng/mL." Ignore this statement. It simple indicates a range covering the values for healthy men with prostates. It has nothing to do with the range of values that the test can measure. Ultrasensitive tests can be used on men with untreated prostates, but they are more expensive and the added sensitivity is usually of no value.

Djin
Posted 7/28/2023 5:53 PM (GMT 0)

Mumbo said...
I had genetic testing and it was negative for the common PCa factors in 2019. The good thing is there is nothing special to warn brothers and sons about other than family history in general. The bad thing is there is nothing to hang the cause on so you still wonder, why me? what could I have done?

ED is a longer range issue compared to incontinence. From the statistics my urologist provided me in 2018 which was based on their experience, most men (77%) regained continence within 3 mos and 95% by 12 months (no pads). Whereas, ED recovery was more like 50% at three months, 75% at 12 months. Needless to say the good ED results are skewed towards younger men and older men tend to have urinary issues to start with so quite a mixed bag for comparisons. Hopefully, MSK will guide you with medication, vacuum pump, and so regarding your ED recovery.

I posted after my surgery about lingering aches and pains asking the question about long do the effects of surgery last and when will I feel back to normal? The answers ranged from 3 months to never with 6-12 months being common as I recall. PCa is the long game for sure.

Definitely sounds like the genetic testing is about the same. I joked with my children (all girls) and told them that the good news is they will not get PCa. Haha.

MSK seemed confident that one way or another they will get the ED under control. They mentioned trying injections but I’ll wait and see that the specialists say next month. I knew it was a side effect and will live with it if I have to. I’m hoping I don’t though. Ha.

It’s much better knowing that many have the same aches and pains as I do. At least I know it’s normal. I glad I found this group and appreciate all the responses. Thank you again Mumbo.
Posted 7/28/2023 8:15 PM (GMT 0)
Hi Mark, My wife and I live in Albany. I suppose I have had near 100 appointments and treatments at MSK over the years, and used AMTRAK for every appointment, sometimes alone, sometimes with my wife. If you are stopping in Albany on your to or fros, be glad to have coffee. If you and your wife ever get hung up in travel delays (our upstate winters are now the land of ice storms), we would be happy to offer our guest room. My email is public on this site and you can look it up here under NewspaperLover. Best wishes… Bill
Posted 7/28/2023 8:20 PM (GMT 0)
Mark, I would add just a couple of things to the solid replies you have already received.

Important to note... MSKCC uses a cutoff of <.05. Meaning, that their test/assay, does not detect any PSA below .05. So, I just cannot help but wonder if someone in the lab or someone entering the result into the computer/portal left the < sign off by mistake and you are really <.05, meaning undetectable by MSKCC standards. Might be worth asking someone to double check with the lab. Or you can wait until your next PSA. Honestly, if I was showing detectable PSA after surgery, I would want testing done every 3 months. With that said, I'm not clear on when you had your PSA tested and got the .05 result. If it was 3 - 6 weeks after surgery, it might not mean anything,

I asked my RO at MSK why they use .05 as cutoff when more sensitive tests are available, and he replied that they don't consider anything below .05 to be meaningful.

Only other thing I can add, is that at 10 weeks, I think it's very early in the game for erectile function to return. It can take up to 2 years to get to the best you will get

Good luck, stick around, and keep us posted
Posted 7/28/2023 8:44 PM (GMT 0)

DjinTonic said...
"The assay shows a range of 0.00 ng/mL - 4.00 ng/mL." Ignore this statement. It simple indicates a range covering the values for healthy men with prostates. It has nothing to do with the range of values that the test can measure. Ultrasensitive tests can be used on men with untreated prostates, but they are more expensive and the added sensitivity is usually of no value.

Djin

Thank you Djin. Good to know. I will definitely just be waiting to see how the next goes. I will probably need to ask more questions also. Thank you again for the insight.
Mark
Posted 7/28/2023 8:55 PM (GMT 0)

NewspaperLover said...
Hi Mark, My wife and I live in Albany. I suppose I have had near 100 appointments and treatments at MSK over the years, and used AMTRAK for every appointment, sometimes alone, sometimes with my wife. If you are stopping in Albany on your to or fros, be glad to have coffee. If you and your wife ever get hung up in travel delays (our upstate winters are now the land of ice storms), we would be happy to offer our guest room. My email is public on this site and you can look it up here under NewspaperLover. Best wishes… Bill

Thank you Bill for the generous offer. I am sure I will be making many trips in the future. I will definitely keep you in mind and it would be good to have coffee sometime. The train is definitely the way to go. Our weather sure has changed and my wife won’t travel in snow so you never know what will happen. It’s very nice of you to make such an offer. We will keep in touch. Thank you again
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