I started to have regular PSA tests six years ago when I began to experience decreased urine flow. The initial PSA was 1.9 and gradually increased to 4.5 in 2008. My urologist suggested biopsies and took out eighteen cores which were all benign. Over the next two years the PSA tests jumped up and down between 5.0 and 7.2. In March of this year I had another round of biopsies which indicated cancer cells in twenty percent of one core. I then had a CAT scan and a bone scan which were negative for metastasis. I consulted with radiologists, a medical oncologist and a surgeon. The radiologists and surgeon all suggested their treatment, but the medical oncologist asked what I wanted to do. When I told her that I was considering active surveillance she thought it was a good idea, but warned me that I might need more aggressive treatment in the future.
My urologist agreed to monitor me every three months and perform another round of biopsies in March of 2011. In June of this year my PSA came down to 5.5, but went up to 7.3 in September. He gave me a prescription for an antibiotic which I am to take before my next visit in January. I am comfortable with this decision and plan to remain on active surveillance unless my PSA rises above 15 or my biopsies show significant cancer growth.
I returned to my urologist this past week after taking a round of antibiotics. My PSA which was 7.3 in September is now 7.6 and the doctor wants me to have an MRI which is scheduled for this week. He also set up the date of March 2nd for another round of biopsies. I don't look forward to this procedure because I had a number of complications the last time. It was not overly uncomfortable, but I wound up with a catheter, two infections, scar tissue in my urethra from the catheter and sand particles in my urine. This time I plan to double up on my Flomax and drink lots of fluids, hoping the flood gates remain open.
I'll update in March.
On Wednesday, March 2nd I had my third round of eighteen core biopsies and this time cancer was not found, but the area where Gleason Six was found last year showed one core with atypical cells. I understand that atypical means pre-cancerous. [Not necessarily - in plain language atypical means not normal. There are many varieties of atypical cells which are not cancer. If we look at our skin, there are all manner of atypical cells - freckles, warts, bumps and lesions - but they are not dangerous cancers - the dangerous skin cancer is an atypical cell labelled melanoma.]
Unfortunately two days later I could not urinate and went to an emergency room where they inserted a catheter and put me on IV antibiotics for an infection. The catheter is now out and I am fine, but can anyone tell me about accurate tests other than biopsies which can be used? [There are no really definitive tests other than biopsy procedures. A Color-Doppler Ultrasound (CDU) scan, done by a well trained operator can be helpful in this context. See Jon Nowlin's story. Regrettably there are not many places where this scan is done.]
I now plan to avoid another biopsy unless my PSA doubles in less than three years or a digital exam indicates a lump or area hardness. I will continue with periodic PSA tests and digital exams.
I thank the YANA site for giving me the courage to follow active surveillance.
I have one good thing to report and one caution for you.
My latest PSA last week came in at 6.2 down from 7.6 and the digital exam revealed nothing new.
The caution concerns the Cipro family of antibiotics. I have had Cipro a number of times in the past four years, but had a bad reaction this past March. I developed pain in the heel of my left foot at that time and thought I must have bruised my foot. It did not get any better after six weeks and I accidentally stumbled on an internet site that mentioned Cipro side effects. Further investigation revealed that Cipro can cause Achilles Tendonitis and rupture. My urologist confirmed that it is probably tendonitis and suggested further tests, but I seem to be improving with exercises outlined on the internet for tendonitis. Therefore I shall hold off on any M.R.I unless my symptoms get worse. [This echoes the advice I had from one of my doctors in South Africa when I asked him to prescribe Cipro in the early days of my journey. He declined on the basis that for me at that time, in his opinion, the risks of side effects outweighed any value I might get.]
Good luck to all of my fellow YANA members.
My PSA is back up to 7.5 after dropping to 6.3 in June. It was 7.6 last March when I had my last round of biopsies, so I consider it to be holding steady for now. My urologist wants to see me again in February after another PSA test and might perform a cystoscopy to check on the urethra and bladder.
In my last entry I stated that I would not consider another round of biopsies unless my PSA doubles in less than three years. This was due to the hospitalization and serious ecoli infection I had from the biopsies. I mention it because I have found a possible solution for any future biopsies. The solution is to have a Betadine suppository or wash in the rectum before the procedure. Some studies indicated that the infection rate goes way down with such a procedure.
I am glad Terry that you have reopened this site, but more importantly I urge you not to overdo your work on the site. You deserve the time to pursue those things that give you pleasure after devoting all those years to helping prostate cancer patients find solutions and comfort. [Thank you for your kind words, Gregory. I'm sure I'll find a way to lighten my load!!]
I see my urologist every four months and my most recent visit showed a spike in my PSA of almost two points. A semen sample showed a prostate infection which has recurred after an e-coli infection last year from a biopsy procedure which put me in the hospital for five days. I took an antibiotic for two weeks, but the infection still showed up so I am currently on another antibiotic for three additional weeks. Let's hope the infection clears up and the PSA comes down. I have been very comfortable with Active Surveillance up to now and hope to continue. Although the prostate infection exists I have no discomfort or other symptoms.
Future biopsies are full of danger for me due to my past blood sepsis and I am looking for alternate tests. I am considering monitoring my condition with M.R.I tests which use a rectal probe and a contrast agent. Has anyone used this approach? I don't want to go the route of Dr. Lee's ultrasound test because of the need for targeted biopsies if increased blood flow is found in any area of the prostate. I am waiting and hoping for a urine or blood test that can distinguish between indolent and aggressive prostate cancer. Such a test will save countless men from the side effects of treatment.
What do I do now? Since I had an ecoli infection last year which put me in the hospital I get periodic bacterial infections and my PSA keeps rising. I have been on three different antibiotics for the last three months and the infection finally went away. My PSA was 7.5 last November and went up to 9.4 in February when the infection was discovered. During the treatment it went up to 11.4 and three weeks after the treatment finished it went down to 10.4. I have been on active surveillance for a little more than two years and the normal thing to do is get another round of biopsies which, for me, could be dangerous due to ecoli and blood spesis after the last round.
My thoughts are as follows:
- Wait until October and get another PSA test to see if the score comes down.
- If the PSA does not come down, find a MRI center with the latest equipment and have a test with a rectal coil plus a contrast agent.
- If the MRI shows anything, have limited biopsies of only the questionable areas after working with an infectious control doctor to lessen the chance of another life threatening ecoli infection.
I do not want to give up on Active Surveillance unless I am convinced that my Gleason 6 has morphed into something more. I have had three rounds of biopsies and cancer cells were only found in twenty percent of one core out of fifty four or fifty six.
After having been successfully treated several months ago for a prostate infection I was hoping for a drop in my PSA. To my surprise it jumped to 12.4. My urologist instructed me to submit a semen specimen and the results came back with another bacterial prostate infection diagnosis. It sounds strange, but I was happy with the diagnosis for it probably means that the PSA spike is not due to advancing prostate cancer. I am on another round of antibiotic medication with the hope that it clears up and the PSA goes down. There have been no symptoms other than the lab result so I guess the infection would be called infectious inflammatory prostatitis.
Although my latest prostate infection is cured my PSA has risen to 14.1. I decided to have an MRI with a rectal coil instead of another round of biopsies due to a previous hospital stay. The result is that two nodules were picked up by the test. After much soul searching I have decided to have targeted biopsies in hospital with a round of a different antibiotic before and after the procedure. I am truly worried about getting another life threatening ecoli infection and blood sepsis, but I would be devastated if I went ahead with surgery and found out that the pathology report was still Gleason six. The procedure is scheduled for January 27th. and, in the meantime, my wife and I have planned an early January Caribbean cruise to take our minds off problems and celebrate our forty eighth anniversary.
As soon as I post this update I plan to make my small annual contribution to YANA and urge my fellow members to consider YANA contributions. The site has been my lifeline and Terry Herbert is our hero.
I guess it's time that I might have to choose a treatment. I had twenty nine cores removed from my prostate last week although I was under the impression that I would only have targeted biopsies due to an MRI with a rectal coil a month ago which identified two nodules. A total of eighty three pieces have been taken out of my prostate over the last five years. There was no cancer detected in the two nodules, but Gleason 7 (4 plus 3) was found in six percent of one of three cores in the mid left lobe, the same place that Gleason 6 was found three years ago. Before I make any decision I want a second opinion on the slides. I don't like any of the treatments due to their side effects. I am thinking of ruling out any form of radiation since my prostate has a strangle hold on my urethra and I am concerned that a fried prostate might make urine flow a greater problem in the future.
I received the second opinion from Johns Hopkins and it agrees with the first one except for one thing. The second opinion stated that the (4+3) diagnosis was in less than five percent of one core rather than the six percent that the original diagnosis stated. As a result I have decided on Da Vinci Robotic Surgery. I traveled to Orlando yesterday to consult with Dr. Patel who has performed more than six thousand of these surgeries and set a date of April 8th. I had hoped to remain on Active Surveillance, but circumstances have changed and I, reluctantly, have made a new choice. My brother, sons and wife all urged me to do something. If the score was (3+4) in only one core I probably would have continued Active Surveillance. If my urologist had just done the targeted biopsies of the two nodules picked up on the MRI that we agreed to biopsy no cancer would have been found and I would be happily ignorant for awhile longer.
After several years on Active Surveillance it became necessary for me to choose a treatment as laid out in my previous entry. My DaVinci surgery was performed on April 8TH in Orlando, Florida by Dr. Vipul Patel. The good news is that the pathology report downgraded the Gleason score from 7B (4+3) to 7A (3+4) and all margins were clear. The eleven lymph nodes were also clear and the cancer was fully contained in the gland. Since the gland was three times the size of a normal gland it invaded the bladder and a repair needed to be made to the bladder.
Recovery has been uneventful except for severe intestinal pains for five days until I had a bowel movement. The catheter was removed on the fourth day and, as of today, I am beginning to feel human again. Now I must work on continence and sexual rehabilitation. Please feel free to contact me if you are considering DaVinci surgery and especially if you are considering the Global Robotics Institute in Orlando.
It has been a little more than seven weeks since my DaVinci surgery and I am very pleased with my progress. In the first hours after my catheter was removed I soaked two diapers and then I was fully continent at night and for the first half of the day. During the latter part of the day I would lose a drop or two several times in the afternoon and early evening. For the last two weeks I have been fully continent all day and night. During today's visit with my surgeon I was told that my six week PSA is 0.02 which is basically undetectable. Potency is also showing signs of life with my regimen of daily use of Cialis and a penis pump. At the present time my erection without the pump is strong enough for penetration, but I am unable to sustain it for longer than thirty seconds. At seventy two years old I had high hopes, but much lower expectations. So far I am exceeding expectations.
My latest PSA is <0.01 which makes me very happy. I have recovered nicely from my DaVinci surgery with a number of positive outcomes and a few negatives. The incisions have healed nicely and my urine stream is much stronger. There is no incontinence and orgasms are as intense as before surgery. Erections are a work in progress, but are improving. On the negative side I must report that my flaccid penis is definitely smaller. Although my erections are firm enough for penetration I lose them soon after penetration. For now the penis pump and constriction rings work, but sensitivity is lost. I need manual stimulation to climax. I am a little uncomfortable reporting these experiences, but feel it is important for those who have been diagnosed and are thinking about possible treatment.
I regret that I had to make a choice after being on Active Surveillance for five years and wish to urge all A.S. men to monitor their progress. Does Gleason 6 morph into something higher over the years or do biopsies miss more aggressive cancers due to the needle in a haystack process? My first and third biopsies found no cancer. My second found Gleason 6 and my fourth found Gleason 7B (4+3). The final pathology report after surgery found Gleason 7A (3+4). Was it Gleason 7A all along?
Yesterday was my eight month visit to my urologist and things are progressing nicely including my PSA which remains <0.01. I am fully continent and do kegels whenever I think of them. Erections have improved, but I still need manual stimulation to climax due to reduced sensitivity since my surgery which I believe will improve over time. I wish all of you wonderful holidays ahead and a special thanks to Terry Herbert for the information and comfort he has given us over the years. I would have been an emotional basket case without this site.
April marks the one year anniversary of my robotic surgery and I had a PSA test the other day in preparation for a visit with my urologist. The PSA remains <0.01 and everything else remains as it was in my December update for which I am grateful. Did I make the right choice? I believe I made the right choice, but it is not a choice I wanted to make as I was hoping to remain on active surveillance for the rest of my life and die of something else in fifteen or twenty years. Being on active surveillance gave me the time to research every possible treatment and make an informed decision about what was right tor me and my personality.
My latest PSA result came in yesterday and it is undetectable which makes me extremely happy. Continence is complete, even when sneezing, coughing or lifting heavy objects. Erections are rigid, but there seems to be some loss of sensitivity because it takes much longer to climax. I am not complaining at age seventy three.
I, along with many others, received an email from Mark Freedkin yesterday with an update from Terry Herbert in which Terry mentions his dire health situation. I am so grateful to the YANA site and Terry over the last four and a half years for the information, support and information about this insidious disease. After posting this update I plan to make a small donation to the YANA site for Terry and I urge others to do the same.
Another six months have passed and my PSA remains undetectable. This is certainly good news and I am grateful to this site and to my surgeon, Dr. Vipul Patel, who has performed more than seven thousand DaVinci prostatectomies. All else remains as it was in my last update.
What do I do now? Two weeks ago I discovered a swollen lump in my groin and thought that I must have a post prostatectomy inguinal hernia. I went to my urologist for confirmation only to find out it is a large swollen lymph node. Next trip was to an oncologist who ordered a fusion PET/CT exam which showed a red hot lymph node and some uptake in a testicle. Now we think we are dealing with testicular cancer. My next scan was an Ultrasound which cleared the testicle. I also had some blood tests which came back with a PSA of less than 0.01 which eliminated a recurrence of prostate cancer. A biopsy was ordered and I waited anxiously for a week for the results. The result is neuro-endocrine cancer, a disease I never heard of before. As of now I don't know the primary site. According to the internet it could be the brain, lungs, gastro-intestinal tract or the bladder.
Thanks for letting me rant. I also want to bring you up to date on my prostate cancer. Everything is working fine and my PSA is undetectable as I mentioned in the previous paragraph. Three weeks ago life was great.
After my surgery I worked so hard with my Kegel exercises, the penis pump and Cialis that I fully regained all functions. Full continence returned within two weeks, partial erections returned within six weeks and rigid erections returned within a year. My PSA is undetectable and I thought life was back to normal. Five months ago I wrote that I had a swollen inguinal lymph node which turned out to be neuro-endocrine cancer which is unrelated to the prostate cancer. The irony of this is that I had to undergo chemo and radiation of the two inguinal areas plus the whole pelvic area. The radiation damage to my pelvic area will probably mean impotence within the next year if I survive the new cancer. During the chemo I needed to wear pads, but that is no longer necessary. Sometimes life sucks.
It has been a year since I updated and, unfortunately, life continues to suck. My wife of fifty one years died in January from pancreatic cancer after a two and a half year battle with the disease. Although my neuroendocrine cancer is in remission, the doctors at Moffitt Cancer Center can't find where the cancer started even though I have had six PET/CT Scans in the last year and a half. I have been told that the inguinal lymph nodes where it was found can't be the primary site, but spread there from somewhere else. The best they could tell me is that the primary site is somewhere below the diaphragm because of the spread to the lymph nodes in the groin. I have this nightmare that it will suddenly rear its head and spread all over my body.
My PSA is undetectable and erections remain rigid which is a surprise to me since I have had intense radiation to the inguinal and pelvic area more than a year ago for the neuroendocrine cancer. In the meantime I am checking off things on my bucket list and am enjoying my newest grand daughter.
Gregory's e-mail address is: email@example.com