[It is important to distinguish between clinical and pathological staging if nomograms such as the Partin Tables are used.]
I was considering writing my story pending my results after surgery. It seemed to me that the vast majority of YANA stories that I read, from people who had T2b or T2c tumors did not have positive outcomes from surgery and resulted in further treatments or problems. At this point, my story is nothing but uplifting (and I hope it stays that way). Today's date is Saturday, August 15, 2009. I am one and a half weeks post surgery.
Six years ago, at age 50, I had a PSA test done as part of a life insurance exam, and it was 1.15. That same year, I had a physical. It seemed like the right thing to do in the year one turns 50. All was normal, and I have been completely healthy since. I am in excellent shape, running every other day from 3 to 10+ miles. In April 2009, I was considering another life insurance change, and went through their exam and blood test, and failed with a high PSA. My doctor re-did the PSA in May and got an 8.3. He also did a free PSA test. My free PSA of 13, was suggestive of cancer, as was the high PSA doubling time rate, climbing from 1.15 to 8.3 in six years.
Now it was on to a urologist and a biopsy. My biopsy was done June 4, 2009. The procedure itself was not very bad, but I felt for most of the rest of the day like I'd been punched in the gut. The next day at work, I felt normal. I went back to the urologist a week later, and I had prepared myself for a cancer diagnosis. He did not disappoint me. Ten of my eleven biopsy specimens were cancerous, I was given a Gleason Score of 6(3+3), and my tumor stage was a T2c. We discussed different treatments, and he recommended surgery, which we also agreed with after our internet research. Our big decision was, should we let him do a conventional radical prostatectomy, or should we do the Da Vinci robot-assisted surgery?
We decided on the Da Vinci surgery for 3 main reasons. First, the recuperation time is less, and being self employed, I wanted to return to work quickly. Second, blood loss is less with robot-assisted surgery. Third, and important for me, the percentage of negative surgical margins is higher according to the Da Vinci people. With my tumor stage being a T2c, I had a good chance of not having negative surgical margins, and I was concerned about going through surgery, having positive surgical margins and very shortly afterwards beginning radiation and maybe who knows what after that. Now, having a higher percentage of negative surgical margins with Da Vinci does not make sense to me, or to a physician friend that I talked to, or to my local urologist who made my diagnosis and who does the conventional surgery. He suggested that the Da Vinci surgeons might be cherry-picking their cases to boost their statistics. I know that I was not a cherry-picked case, and that I was pushing the limit being a T2c. We had a consultation and set up a surgery with Dr. Brian Naftulin at Sutter General Hospital in Sacramento. He would be using the nerve sparing technique.
The surgery was done Tuesday August 4, and I was informed that things went ideal, with me only losing two tablespoons of blood during surgery. Unfortunately, that evening I sprung a leak, and lost about a unit and a half of blood through the drainage port. Due to the oozing, I stayed in the hospital two nights instead of the usual one. My pain was not great, and from the second day, until the end of the first week, any pain that I had, was gas and bowel related. By Saturday, I was getting a lot of energy, and by Monday I was walking 5 miles a day (with the catheter in). Dr. Naftulin had had me see a physical therapist, (who had also had his prostate removed 5 to 10 years ago), for the purpose of incontinence therapy. I started Kegel type exercises about a day after surgery and did them for the rest of the week that the catheter was in. Fortunately(?) I mixed up his instructions, doing twice as many Kegel exercises as he asked for.
Tuesday, August 11 was the catheter removal day. Since I was expecting big hassles and discomfort from wearing the catheter, wearing it was nowhere near the dreaded experience I had feared, and it's removal was painless. After it's removal, when I was outside, I blew my nose and forgot to squeeze my muscles. That was surprise leak #1. Two days later, when getting up from a chair I had a little leak #2. I was shocked--that was it!! I was basically dry from day one!!
August 11 was also the pathology report day. I learned three main things from the pathology report. First, my Gleason Score was upgraded from a 6 to a 7(3+4). Second, my Tumor Stage was upgraded from a T2c to a T3a. I had looked up my numbers in the Partin Coefficient Tables, to see what my odds were that my cancer was contained in the prostate. With my old numbers (6 and T2c), I had a 43% chance that the cancer would be contained within the prostate. With my new numbers, the percentage dropped to 11%! But the third thing I learned from the pathology report was that I had negative surgical margins!! Apparently my cancer had slightly penetrated the capsule in one area, but enough extra tissue was removed during the surgery, to still give a negative surgical margin in that area. I feel that I am VERY fortunate to get this pathology report, and that my inattention to PSA testing came close to giving me a different result. I should have been on top of my PSA level, as my father-in-law died from prostate cancer. He had a PSA of 700 when diagnosed and the cancer had spread throughout the bones. Forty per cent of my prostate ended up being cancerous. I feel that if I had caught it 6 months later, I would not have had this result. I know that future PSA tests will be the test of cured prostate cancer, but the surgeon basically said, "Have a good life", and mentioned 20 or 30 years.
I told my wife that I never once asked, "God, why me?", when I was diagnosed with cancer. But I am now asking, "God, why me?", when pondering the pathology report. To me it is like two cars, with five people in each one, crashing into each other. Nine people die, but I walk away from the accident. The Partin Tables were giving me one in ten odds of getting the result I got. Hopefully, my story will give someone some encouragement, and my job as a dentist will give me opportunity to ask many 50 and 60 year old males if they know what their PSA is.
At the one week post op appointment, I asked the surgeon about sex, and he said to try whenever I wanted. He started me on Viagra that day, and I guess I'll be taking it about a year. Today, I was able to ejaculate without an erection. It was not very forceful, but I just started laughing, just thinking that I might recuperate fast in the bedroom department also.
I plan to go back to work in 4 days (two weeks post surgery). I can think of three things to credit my fast recovery, and my surgery outcome. First, I was in very good physical shape before surgery. Second, I believe my surgeon is very skilled. Third, there were a lot of people praying for me, and I am blessed that their prayers were answered.
I will update my story after my PSA test results in about a month.
October 25, 2009. I did not have a follow up PSA test a month later, like I had thought. More on that later...
I went back to work part time at 2 weeks, and full time at 3 weeks, with no problems. I started running again at 3½ weeks. All has progressed amazingly well.
The only slow progress is with the impotence issues. I am taking 100 mg Viagra 3 times a week. Fullness is increasing slightly with time, and I have maintained a minimal erection long enough for intercourse 3 or 4 times, but it usually "deflates" prematurely. My urologist feels I will probably be pretty much back to normal in a year.
I had a follow up PSA test on October 9, 2009 (9 1/2 weeks) and my consultation with my urologist October 21, 2009 (11 weeks), and he gave me the news that I wanted to hear: PSA less than 0.05! Praise God!!! My next test will be in March.
I had one follow up question for my urologist: "What are the chances, that my cancer will come back sometime in the future?" He said that if my Gleason Score had remained a 3+3 after the surgery, I would have about a 90% chance of remaining cancer free. With my Gleason Score changing to a 3+4 after surgery, my percentage dropped to 85%, definitely good odds and good news.
I had another follow up PSA test in March and my result was again <0.05! My next PSA will be in August at the 1 year follow up.
As for the impotency, I saw no improvement from months 2-5, but from months 5-7 after surgery, the fullness definitely improved. I have still been using Viagra 100mg three times per week, but I just tried some Cialis 20mg samples and I will be switching to Cialis do to it's longer duration and effectiveness for me. Occasionally I have not used a pill but it is noticeably more work! My urologist says that improvement is to be expected past the 1 year point even to the 2-3 year point as the nerves continue their slow healing.
I will update again in August.
I had another follow up PSA test in March and my result was again less than 0.05! My next PSA will be in August at the 1 year follow up.
There has been no significant improvement or changes in the impotency since the last test. I am taking Cialis once a week, with the results quite satisfactory. (I would take the Cialis more often, but with a high deductible insurance, I pay for it all out of my pocket.) It is a lot of work without Cialis, and occasionally sometimes unsuccessful.
I have no complaints with my "new normal". I will try and be more punctual with my February/March update.
My most recent PSA test was February 28, 2011. My result was 0.06. While this was up from all of my previous < 0.05 results, my urologist has told me from the beginning that he is only concerned about values > 0.1. He feels that any result less than that, is subject to lab accuracy and variation that makes these slight differences insignificant. So, is my score still floating in the undetectable range, or is it slowly climbing on it's way to some point that will require further treatment? Time will tell.
I still use Cialis about one third of the time now. I still get better results with medication, but I get along O.K. without and save money. The last time I posted, I figured I would be using medication for the rest of my life, and now it is optional - great improvement. I started cutting the Cialis 20mg in half about 3 months ago, and I wish I had tried that earlier.
I should add that while my wife and I have intercourse pretty much weekly, my desire for sex is significantly less than before surgery, even though I could see it starting to decrease in the 1-2 years before diagnosis. I'll be seeing my General Practitioner in the next month or two and plan to have my testosterone level checked to satisfy my curiosity.
I tried to update my story last summer, but it seemed to me that the YANA website was closing. [It was, but it is going as strongly as ever now.]
August 8, 2011 at the second year anniversary of my surgery, my new PSA had risen to 0.11. Two months later on October 11, 2011 my PSA had climbed to 0.17. We were now looking at cancer recurrence with a relatively fast PSA doubling time of about 6 months. It was now on to external beam radiation. [A study published in November 2011 and referred to in Ultra Sensitive PSA raises some issues on the calculation of doubling times using the ultra sensitive test.]
My initial goal was to jump right on treatment, irradiating the prostate bed and being finished before the end of 2011. This didn't happen, partly due to our daughter's November wedding in London, and my radiologist suggesting different treatment from what I was initially thinking. He was proposing irradiating an area larger than the prostate bed to include the lymph nodes in the area, in case the cancer had left the prostate bed. Also, he was proposing hormone therapy for 6-8 weeks prior to radiation and for the 8 weeks during treatment.
I ran his treatment plan by a radiologist we know in another part of California, and he said if my cancer were his cancer, he would begin the same treatment plan on himself. Both doctors did not want any bone scans, as they felt that with my low PSA number, the cancer must be confined near the prostate bed. Also, both doctors felt that the monthly Lupron shots will kill some prostate cancer cells, greatly stress or weaken the balance of the cancer, making them more susceptible to being killed by the radiation and increasing the chance of a cure from radiation. Since the prostate cancer thrives in the presence of testosterone, the hormone therapy [probably better known as ADT (Androgen Deprivation Therapy)] will basically chemically castrate you and starve the cancer of testosterone.
On Dec 4, I started my first of 4 monthly Lupron shots. On Jan 4, 2012 I had my second shot. I have done very well on the side effects. I have had no hot flashes, had almost no fatigue during daily activities, but I do feel tired during ALL of my running . Just in the last week, my interest in sex has dropped to zero and even with Cialis I am not successful. Radiation should start in about 3 weeks with 40 treatments planned. Plugging my cancer details into the post-radical prostatectomy nomogram from the Sloan-Kettering website, it looks like I still have a 2/3 chance of avoiding a cancer recurrence over 5 or 10 years, so I am still very optimistic long term.
I have read George Hardy's YANA story (look up under PSA 182) and am reading some of Jane Plant's books on diet which he mentions. I have always been a HUGE milk drinker, have now stopped drinking cows milk, and plan on making additional dietary changes.
April 15, 2012. My 39 radiation treatments began early February and ended late March. The first 24 treatments hit the pelvic lymph nodes and the prostate bed, and the last 14 treatments only hit the prostate bed area.
I had no urinary side effects and very managable gastrointestinal side effects. The recommended diet of no fruit or raw vegetables and minimal cooked vegetables, kept the diarrhea managable. I also had tenesmus and minor urgency. I had my third and fourth (and last) Lupron shots early February and March.
I was able to work my normal day, taking off 45 minutes daily for the radiation. Fatigue was not a factor except for running. I kept up my running throughout treatment, but my pace slowed considerably, about 60 to 90 seconds per mile. I was told to expect it to take 8 months to get over the side effects of the 4 months of Lupron. I am now 2-1/2 weeks past radiation, adding fruits, vegetables, grains and nuts as my colon will allow. I expect in another week, I should be able to eat nearly anything again.
I have a PSA test planned for late May and a visit with the urologist and I will update again then. I thank God for seeing me through this chapter with a minimum of side effects, and I pray that this will be the last chapter in my fight against prostate cancer.
June 9, 2012 I had a PSA and Testosterone test 2 1/2 weeks ago and a visit with my urologist last week. My PSA was back to undetectable, which I was not surprised at with the radiation and the Lupron just being finished. I was led to believe that occasionally, after Lupron, the PSA can go to zero and stay there, while the Lupron wears off even if there is some cancer left. So you can get a false negative sometimes. The surprise was my testosterone. Last Fall I had it checked before the Lupron began. It was 520. After 5 weeks of Lupron it had dropped to 18. It is currently 733! It is surprising that it has rebounded so quickly after ending the lupron, but it indicates that the Lupron effects have worn off, and that the PSA of undetectable is a true undetectable. Diet and intercourse are back to my pre-radiation normal. Running is slowly getting faster. Three month PSAs are planned for the next year.
August 17, 2012 was my second PSA and testosterone test since my radiation was completed. My PSA remained undetectable (<0.05). My testosterone was 399. (My radiologist is suspicious of the 733 number that I got on the last test and thinks it was probably incorrect.) I am still feeling fine, but running has not been progressing, probably due to our nearly constant 90-100 degree temperatures, (and I run mostly around 6:00 p.m.) My next tests will be in November and then February.
My Nov. 18 blood test yielded the following results. PSA remained undetectable at <0.05 and my testosterone dropped a little more to 346. I will take another PSA test in late Feb. 2013, at the one year anniversary of finishing my radiation. Hopefully, God willing, I can keep this streak going!
Today I want to talk about two items.
First I need to give an update about dietary changes I referred to January 2012. I have continued with minimal dairy for the last year. I drink almond milk exclusively, eat cheese maybe once a month on a pizza, and have had ice cream twice in the last year. Red meat has been totally eliminated (except for two In-N-Out Burgers while traveling, and beef spaghetti once). We eat chicken, fish, and a lot more beans. The switch has been easy, and my wife quickly jumped on board.
The second thing I wanted to do, was to compare my two prostate cancer treatments. I haven't read a lot of stories from people who had both robotic surgery and radiation with hormone therapy. Looking back, the positives to robotic surgery were:
- Quick, easy recovery--back to work
- My athletic performance was back to its pre-surgery normal in less than 4 months.
The negatives to robotic surgery were:
- ED problems--mild but manageable.
- Libido slightly lessened.
The positives to radiation and hormone therapy were:
- I was able to work throughout treatment.
- There was no additional ED problems.
The negatives to radiation and hormone therapy were:
- Four months total treatment time.
- Athletic performance is dramatically decreased. Eight months after treatment has ended I wonder if it will improve any more (my testosterone is down by 1/3 since last year, is that the main reason?)
- My libido has significantly lessened in the past year.
From my personal experience, I consider robotic surgery to be the preferred treatment. Granted, in my case, robotic surgery did not remove all my cancer, but I think that is because I had some cancer just outside the prostate, and when they remove the prostate, they don't remove the prostate plus 1/4" or 1/2" -- they just remove the prostate. I don't think with radiation, unless they suspect that the cancer had spread (which they did not in my case) they irradiate any additional surrounding tissues either. At least by doing surgery first I had the backup option to do radiation later. My next update should be at the 1 year post radiation PSA test in late Febuary or early March.
March 4, 2013. I saw the radiologist today, for the not quite 1 year follow up after my radiation was completed. He made my day, by reporting that my PSA was again <0.05! My next PSA will be in six months.
Sept. 7, 2013. I saw my urologist a couple days ago, and found that my PSA is again <0.05! Thank God for the good report. You definitely don't take good health for granted anymore after being diagnosed with cancer. I have now made it to the 1 1/2 year mark after radiation with a zero PSA. That is longer than I went after my robotic surgery with a zero PSA. My running is a little different than before radiation. I find that I do not have the same level of endurance--I can still run long distances, but I must run them at a slower pace than before. However, my fast workouts on the track, seem unchanged compared with before radiation. A couple months ago, I ran a 6:20 mile. (I had run a 6:00 mile 2+ years ago, but of course I'm a little older now.) I was originally told by my urologist that post surgery nerve healing would continue for two years. I found that intercourse has improved yet again in the past 6 months (4 years post surgery). My urologist told me that he has now gotten this report from other patients, also. I take 5mg Cialis every 4-6 weeks for a little variation, but otherwise nothing. Also, I have continued with the dietary changes that I described in my Dec 2012 entry. I will update with a new PSA in 6 months.
March 25, 2014. First off I must make a small change to my last report from Sept 2013. I was told then that my PSA was undetectable, but I noticed later that the threshold was <0.10 not the <0.05, as it had been previously. My lab had been bought over by another lab, and they were now using a different testing method. I made numerous calls to labs in the area, thinking of switching to a lab that used the method that had given me all of my other results, but I could not find any labs using that method. So I just stayed with the new lab. I now have a new 6 month PSA update and it is again <0.10. I am now 2 years after radiation and will have the PSA tested again in 6 months. I have no notable health changes to report.
Another PSA Test and another undetectable! There are no notable health changes. My next PSA Test will be in a year. This will be the first time in over 5 years that I am going a year between tests. I now consider myself 2-1/2 years cancer free, since my radiation early in 2012. I will update in a year unless something changes.
A new PSA Test, and it is again undetectable, <0.05! I am now 3 1/2 years post radiation. I have no health issues and take no medications. I am still running and following the dietary changes that I made in 2012. Erections are still continuing to improve each year, although minimally now, even 6 years post surgery. Thank you for letting me share my story.
I went to my urologist last week and found out that my PSA is again undetectable at 4-1/2 years after radiation! My visit had a dual purpose, as 4 months ago, 2 months ago, and 1 month ago I had a small amount of bleeding on two subsequent urinations, with no other symptoms. I had a CT Scan done from my kidneys down, and he did a cystoscopy, to visualize the inside of my bladder and urethra. All looked normal and he is not concerned.
First, I have not had any bleeding recurrences since last year's episodes. Second is my PSA result. I had a PSA test last month and did not speak to the urologist--his office is 50 miles away and we decided not to make an appointment this year--just to call in for the results. The nurse told me that my PSA was 0.1, but that 0.1 was considered undetectable (?), but, that they wanted to do another PSA test in 6 months (?). I have been having yearly tests. Is 0.1 really undetectable or is my PSA rising? I have been using the same lab all this time, but they have used at least three different testing methods over the last 8 years. First the Siemens Chemiluminescent Method, then the Abbott Architect Assay Method and now for the first time the Beckman Coulter DxI Method. I decided not to contact the urologist for clarification. "It is what it is" and I will hopefully get some clarification when I see him in 6 months.
Jim's e-mail address is: jbdecker50 AT yahoo.com (replace "AT" with "@")