Pre-Diagnosis Background
When I turned 50, I began having my PSA tested at my annual exams. From 1993 to 1999, my PSA ranged from 2.0 to 3.8. In 2000, my PSA spiked to 6.7 from 3.8 the year prior.
Due to this elevated PSA, I had a biopsy with negative results. My urologist diagnosed BPH and suggested watchful waiting with PSA tests and DRE every 6 months. From 2001 to 2007, my PSA fluctuated between 2.8 and 5.1 and urgency and frequency problems slowly became worse although this was more of a bother rather than a life style altering problem. All symptoms were attributed to BPH.
Diagnosis
In April, 2008, I decided to get a second opinion. Subsequent PSA testing showed a rise to 7.6 from 5.1 the previous November. A biopsy was recommended and a 12 core biopsy was done by my local urologist on April 28, 2008. The biopsy results from the local pathologist indicated the presence of prostate cancer in one of the 12 cores (left Apex) with 10% involvement, with a Gleason Score of 6 (3+3), clinical stage of T1c and prostate size of 54cc. I am currently 65 years old, otherwise in excellent health with no other medical problems or treatments. I had not experienced any serious or chronic erectile issues and was able to achieve erections and sexual intercourse without the use of ED drugs.
To confirm the pathology results, I had my pathology slides sent to Bostwick Labs in Richmond, VA for a second opinion. Their analysis of the slides confirmed the presence of adenocarcinoma in the left Apex with a Gleason Score of 6 (3+3) but with 20% involvement. In addition, at the recommendation of Dr. Stephen Strum, I requested that Bostwick Labs perform a DNA Ploidy analysis on my tissue blocks for the purpose of trying to ascertain the degree of aggressiveness of the prostate cancer. The results of this analysis showed that the cancer cells were diploid rather than aneuploid which is indicative of a more favorable prognosis as diploid cells tend to grow more slowly.
About 6 weeks after my biopsy, I also had a PAP (prostatic acid phosphatase) blood test done, again at the recommendation of Dr. Strum. This test is useful for predicting the risk of PSA recurrence after treatment by helping to determine if the PC is confined to the prostate gland. The test showed a PAP level of 1.3 ng/ml. Studies have shown that with PAP levels under 3 ng/ml, there is a lower risk that the PC is outside the prostate and is unlikely to be outside the surgical field or RT treatment port.
During my research, I learned about a new prognostic test from Aureon Laboratories in Yonkers, NY. Their new test - Prostate Px - can help assess the severity of prostate cancer and was designed to help doctors properly identify which patients are at high risk and which are at low risk for aggressive disease thus helping to make more informed treatment decisions. [Some doubt has been cast by commentators on the value of this test - there are no published, PROSPECTIVE data that substantiate the claims made] I arranged to have my biopsy tissue blocks sent to Aureon for analysis but unfortunately, there was not sufficient material for them to do the test. Since active surveillance was a course of action I was considering, the information from this test would have been very helpful.
However, based on the biopsy and the subsequent tests I did have, I was confident that my PC was early stage, was not aggressive and was confined to the prostate. With this knowledge, I felt I was able to make a more informed decision about possible treatments and somehow felt empowered and less terrified of this dreaded disease. The next step was to determine what treatment - if any - was the right one for me.
Treatment Decision
Since my diagnosis, I immersed myself in researching PCa and, in particular, its various treatment options. I read books (Guide to Surviving Prostate Cancer by Dr. Patrick Walsh; A Primer on Prostate Cancer by Dr. Stephen Strum; Eating Your Way to Better Health by Dr. Charles Meyers and The Prostate Cancer Protection Plan by Dr. Bob Arnot), articles and medical abstracts. I also joined several on-line prostate cancer forums and lists including YANA, PPML, Prostate Cancer and Intimacy (PCAI) and Prostate Cancer InfoLink. I attended meetings of the local Us Too chapter and have spoken with several PCa survivors regarding their treatment choices and experiences.
In addition to discussions with my urologist, I have had consults with a urologist specializing in robotic prostatectomy, a radiation oncologist and a urologist advocating active surveillance or focal cryoablation as a "middle ground" approach.
I soon felt overwhelmed with regard to the treatment choice that would be "right" for me, as I came to understand that there was no consensus choice for treatment - there was no "magic bullet". What I did understand was that for early stage PCa, all options - surgery, radiation, cryotherapy, active surveillance - were appropriate options for me.
From what I learned, it seemed that the 3 treatment options (surgery, radiation, cryotherapy) had basically the same 10 year recurrence or survival statistics and all had side effects but to varying degrees. I also understood that the success of any treatment and the minimization of side effects depended on the skill and experience of the surgeon or oncologist.
After distilling all this information for a few weeks, I narrowed my choices to 2: nerve sparing robotic prostatectomy and active surveillance. I agonized over the decision of surgery versus "waiting" for several weeks and finally decided that robotic prostatectomy was the right choice for me. Factors that influenced this decision were:
Prostatectomy and the biopsy of the removed prostate would provide the most accurate indication of the stage and progression of the PCa. From what I had read, it was my understanding the pre-surgery Gleason and clinical stage were "upgraded" 30% of the time after the prostatectomy. If there was any chance that my PCa was more aggressive than the clinical biopsy indicated, I wanted to know sooner rather than later.
At 65, I felt I was better able to handle the surgery now rather than a few years from now if the PCa progressed.
If my PCa was found to be more advanced, most other treatment options were still available to me.
Robotic prostatectomy was "minimally invasive" offering the prospects of less blood loss, less pain and quicker recovery.
By selecting a surgeon with extensive experience in performing nerve sparing, robotic prostatectomies, the quality of life issues of incontinence and erectile dysfunction would hopefully be minimized.
In July, I scheduled surgery with Dr. Ash Tewari of Weill Cornell Medical College at New York Presbyterian Hospital in New York. Dr. Tewari had performed over 2, 200 robotic prostatectomies and was highly recommended by his former patients I had spoken with. In addition, Dr. Tewari accepted my Medicare insurance which was a big plus. Surgery was scheduled for September 16, 2008.
Surgery and Post Surgery
Surgery was performed on September 16th 2008 at 7:30 AM. By 10:30 AM, I was in the recovery room and was in my hospital room by 11 AM. Dr. Tewari's post surgery comments were very positive indicating that the cancer was contained within the prostate,that both nerve bundles were spared and that the prognosis of non-recurrence of PCa in 15 years was 95%.
The surgical pathology report indicated the following:
Prostate size: 72.9 grams
Gleason Score: 6 (3+3)
Pathologic Stage: T2c - bilateral disease
No regional lymph node metastasis
Margins uninvolved by invasive carcinoma
No extraprostatic extension
No seminal vesicle invasion
No perineural invasion
No venous invasion
No lymphatic ( small vessel) invasion
The day of surgery, the pain was minor and I slept most of the afternoon. I was walking the hospital halls that evening. Most of the discomfort I felt was from the catheter rather than from the surgical incisions. Sleep that night was fitful because of hospital noise and the blood clot cuffs on my ankles - but very little pain.
The next day, the JP Drain was removed and I was discharged from the hospital. I was expecting to be discharged only after having passed gas but this was not the case. I did not pass gas until the second day home from the hospital.
At home, I started walking 3 miles a day the day I came home from the hospital and generally did this each day until the catheter was removed. The only discomfort I experienced was from the catheter when it pulled on the penis and some abdominal pain when I lifted myself out of bed. Other than for Torodol which I took on the first and second day home, the only drug I took for pain and inflammation was prescription strength Ibuprofen (800 mg) which I took twice a day.
I was on a liquid diet until I passed gas which was the second day home. I was then able to eat soft foods (apple sauce, scrambled eggs) until I had a bowel movement which happened on the fifth day home. From that point I was able to eat regular foods although I eased myself into this as I wanted to avoid possible constipation. With a reasonable diet and Colace three times a day, constipation was not a problem.
On September 23rd, one week after surgery the catheter was removed. I was expecting a lot worse when this was done, but in fact, experienced basically zero pain when it was removed. I was instructed to remain at the hospital until I urinated which I did about an hour later.
Aside from the removal of the catheter, the really good news was that I seemed to be relatively continent. I was expecting the worse and thinking that I would be going home wearing a diaper. But since I was able to retain urine in the bladder, I went home with just a pad. I felt great as one of my major concerns about post surgery side effects seemed to have a very positive prognosis. It's been about 5 weeks since my surgery and I have progressed from 2 pads a day to 1 pad a day to 1 liner a day at the present time. I do experience some stress incontinence when coughing or sneezing or standing up from sitting but this has gotten better over the weeks and I am very encouraged by this progress. I certainly think that the Kegel exercises I did prior to surgery and continue to do now have helped greatly.
I will be getting my first post surgery PSA test 6 weeks after surgery (next week) and every 3 months after that for the first year. My first follow up visit with Dr. Tewari is mid-December.
Penile Rehabilitation
One of my major concerns about undergoing a prostatectomy was the possibility of experiencing erectile dysfunction - not being able to achieve an erection - after surgery. In addition, I was also concerned about penile shrinkage as a result of the surgery.
With regard to the shrinkage issue, when the catheter was removed I was very discouraged to see that in its flaccid state, my penis seems significantly smaller in length and girth than it was prior to surgery. It's as if it retracts and hides because of all the trauma it's been put through over the past few weeks. In discussing this with Dr. Tewari's office, and asking if this was a permanent condition, I was told that it takes time for the nerves to recover from the trauma of surgery and that this situation should improve as the nerves recover. At 5 weeks post surgery, I have seen no improvement here.
In addition, 5 weeks post surgery I have not been able to achieve an erection and this is also discouraging although this may be due more to my impatience rather than realistic expectations. However, because achieving erections again is important to me, I have taken a pro-active, aggressive approach to penile rehabilitation with the thought that this will increase my chances that erections will return.
Here's what I have done to this point:
Dr. Tewari prescribed 10 mg of Levitra nightly from the day after surgery to help promote blood flow to the penis. I took Levitra for approximately 3 weeks.
The day after the catheter was removed, I started using a VED (vacuum pump). I try to do this twice a day for 3 -5 minutes each time. The purpose here, is to draw blood into the penis to prevent the muscles from atrophying. It's the old use it or lose it theory.
On October 8, 2008 I consulted with Dr. Andrew McCullough, Director Male Sexual Health and Fertility at the New York University School of Medicine. Dr. McCullough is a recognized expert in the field of erectile dysfunction and is a proponent of taking an aggressive approach to penile rehabilitation after a prostatectomy. He recommended the following: 50 mg of Viagra nightly rather than Levitra as his studies have found Viagra to be more effective; the continued use of the vacuum pump as his studies have shown that this device is effective in drawing some oxygenated blood (arterial) into the penis thus helping to prevent atrophy; and penile injections to promote erections sufficient for intercourse and muscle use. While at his office, he injected me with trimix which had a quick effect and prescribed the following: 15mg papaverine/1mg phentolamine/10mcg alprostadil at a 10 unit dose.
Since my visit with Dr. McCullough, I take Viagra nightly, regularly use the vacuum pump and have self injected once for practice with no effect other than a slight dull pain.
The injection process with the BD injector was painless and I'll try again with hopefully better results.
Over the past weeks, I have had "sex" with my girlfriend a few times but have been unable to achieve an erection even with stimulation although I have had orgasms in the soft state which have been less intense than prior to surgery. One encouraging sign is that she noticed that after I started taking Viagra, I became more semi-erect and larger. There may be life down there yet! Incontinence during these times has not been an issue.
To summarize my experience at this point, I am happy with my decision to choose robotic prostatectomy as a treatment choice; I am very pleased with Dr. Tewari as my surgeon; I am very pleased with the surgical pathology and prognosis; I am very pleased with the minimal pain and quick recovery post surgery; I am happy and encouraged about my progress to full continence; and finally, while the "jury is still out" with regard to my erectile dysfunction, I am hopeful that this problem will be successfully resolved over time as well.
For those that have read this far, I intend to update this post periodically as I hope it will provide helpful information particularly to the newly diagnosed who are "agonizing" over treatment decisions. I know, I've just been there. In the meantime, if you have any questions, you can email me or call me at 973-305-9526. I would be happy to discuss my experience with you.
Gary W
Lincoln Park, New Jersey
UPDATED - February 2010
My latest PSA which was tested in November, 2009 by Dr. Tewari's office, is undetectable (<.01). I am now on a 6 month testing schedule with the next test scheduled for this coming May.
Regarding the side effects after the surgery, here is my experience so far:
Incontinence: I did not experience what I would describe as "major" incontinence problems. For the first week or two after catheter removal, I used 2 pads. From then on, I used 1 pad a day and by the fourth month I was continent and not using any pads. Also, I do not have incontinence during orgasm. I do experience an occasional stress incontinence (a small spurt when sneezing or coughing) but other than that I am happy with my continence.
Erectile Dysfunction: Regaining erectile function has been a work in progress. About one month after surgery, I started an aggressive rehab program under the care of an ED specialist. [There is a piece on rehabilitation on the site - Use It Or Lose It] This involved injections (trimix and then bimix), VED use (vacuum pump) and 50 mg of Viagra nightly. I saw slow improvements but was not able to achieve an erection suitable for penetration until about 1 year after surgery. Now, I am still using the VED and take 100 mg of Viagra "on demand" and am able to achieve penetration even though the firmness of the erection is not what it was pre-surgery. I am not totally satisfied at this time but I have seen improvement and am hopeful this will continue.
Penile Shrinkage: I have experienced some penile shrinkage after surgery. This is particularly evident in the flaccid state. My erections are about ½ to ¾ inch shorter than pre-surgery. I'm not sure what can be done about this but some men have recommended the use of extenders if this becomes an issue.
I hope this helps. Gary.
UPDATED - April 2011
PSA: < .01 as of January 28, 2011.
Incontinence: Occasional leak when coughing or sneezing and bladder is full.
Erectile function: No longer doing injections or using the VED. Can achieve a 7 to 8 (on a scale of 10) erection sufficient for penetration without the use of pills. Duration of erection however is only 20 to 30 minutes. Can achieve a 9 to 10 erection taking a 50 mg pill of Viagra and 1000 mg of L-Arginine with erection lasting longer than 30 minutes. Only take these pills when needed and not therapeutically. Intensity of orgasms vary but not as intense as pre-surgery.
Libido: Since my surgery in September, 2008 my libido has continually diminished. In addition I have gained weight even though I exercise regularly, lack energy, have insomnia and feel depressed at times although the long hard winter in New Jersey may have had something to do with that. I had my testosterone and thyroid levels checked at the end of January. My thyroid panel was normal but my testosterone level was below the low end of the normal range (237). I consulted with Dr. Tewari and since my PSAs have been undetectable in over two years post surgery he has agreed that I might consider testosterone replacement therapy (TRT) with active monitoring of my PSA levels every three months. He has prescribed Androgel 5 gm topical cream. I have not filled the prescription as of yet as I have some concerns over its side effects: increased red blood cell count and possible heart problems, increased LDL and triglycerides and lower HDL, sleep apnea, hair loss and shrunken testicles in addition to the risk of promoting the growth of my now dormant PCa. I have also consulted with an endocrinologist, a rheumatologist and my family physician and all have indicated it would be acceptable for me to try TRT. At this point, I'm still deliberating.
Aside from the loss of libido, I have have no other quality of life issues and am very satisfied with robotic surgery as my treatment choice and with Dr. Tewari as my surgeon.
Four years after diagnosis my PSA is undetectable (.0018 as of April 2012), I am fully continent and have regained erectile function. I can achieve a 7-8 (on a scale of 10) erection without ED drugs and a 9-10 erection with ED drugs. The only current negative side effect from my treatment has been penile shrinkage (about 1 inch) and minor Pyronies neither of which has affected my ability for sexual intercourse. Overall, I am very satisfied with my current condition and with my treatment decision.
No changes from last update
Just passed my 6 year prostatectomy anniversary (September 2008). PSA is still undetectable (<.001), have no incontinence problems and can achieve 7 - 8 (on a scale of 10) erection sufficient for penetration without ED drugs or a 9 - 10 erection using Viagra. I am now 71 years old.
However, a new development has occurred. I just had laparoscopic bi-lateral inguinal hernia surgery. Based on a recent Swedish study (see www.ncbi.nlm.nih.gov/pubmed/23732267) there seems to be a higher incidence of hernia surgery in men that have had surgical or radiation treatment of prostate cancer versus men in a non prostate cancer control group. Anecdotally, my hernia surgeon also believes there is a possible link between prostate surgery and subsequent hernia surgery.
Back in 2008, when I was rearching various treatment options, the potential for increased risk of hernia surgery was never mentioned as a side effect of prostate surgery. Now, it seems that it may be another side effect. For the newly diagnosed, this potential side effect may be something you want to further research and discuss with your urologist, surgeon or radiation oncologist when making your treatment (or non-treatment) decision.
Just passed my 7 year anniversary for surgery in September 2008. My PSA is still undetectable, have only minor stress incontinence and can achieve intercourse with penetration without the use of pills. Have had no complications or issues from hernia surgery done in October 2014. I am now 72 years old.
It has been 8 years since diagnosis and surgery (September, 2008). PSA is undetectable, have only occasional stress incontinence and have no ED issues - I can achieve an erection sufficient for penetration without medications.
2018 is 10 years since I was first diagnosed. I will be 75 years old this year. My latest PSA test which was done in December 2017 showed PSA level of <.001 (undetectable). Since my last update, nothing much has changed. I still have occasional stress incontinence and am able to achieve and erection sufficient for intercourse without the use of pills. Low libido continues to be a problem as I still opted against testosterone replacement therapy. Overall, I am in good health, my quality of life is great and I am very happy and fortunate to be a 10 year survivor.
I'm now 76 and 11 years since diagnosis and surgery. PSA as of December 2018 is still undetectable but now using ED drugs more frequently to attain sufficient erection for penetration. Stress incontinence is also more frequent than in the past but still not a big problem. Overall my health is good and am happy and fortunate to be an 11 year survivor.
It's been 12 years since diagnosis and robotic surgery. PSA is still undetectable. However stress incontinence is more frequent and ED pills are now required for penetration. Overall health is good although my testosterone level is below the low end of the normal range. I am 77 years old and very happy with my quality of life since my surgery.
Gary's e-mail address is: linkshot AT verizon.net (replace "AT" with "@")
