My PSA had been stable at 3.0 for many years. Then it started to rise slowly to 3.8 over about 3 years. On DRE (Digital Rectal Examination) my Internist thought he felt a nodule and sent me to a Urologist. The urologist felt the nodule was a cyst or something like that and not cancer (it has since disappeared) but decided to do a biopsy anyway. The first biopsy result was PIN (prostatic intraepithelial neoplasia) on a couple of samples. Scheduled a second biopsy four months later.
Second biopsy showed cancer, Gleason (3+3) in 5% of two out of twelve cores. The Urologist spent quite a bit of time with us explaining RRP (Retropubic Radical Prostatectomy) (he was a surgeon). He also referred us to radiological oncologist at Northwest Community Hospital (the same one as Roger C.). We had a good discussion with him and for the first time learned about disease progression and that we had some time. Went ahead and scheduled RRP in January.
Through a series of fortunate events found out about UsToo. My wife and I started to research Prostate cancer and treatments. Met with UsToo and talked about active surveillance. Learned more about AS and decided to cancel surgery and educate ourselves further about options.
We went for second and third opinions. My slides were read by two other pathologists confirming the initial diagnosis with no change in Gleason. I began to research PCa and AS through medical journal articles. The more I read the more AS seemed to be a viable option.
I joined UsToo and continued research. Learned about an AS study at Northbrook hospital. In August 2009 joined the study group and had initial appointment. I am now in the study group and am following the protocol. My PSA has been fluctuating, the latest being 3.01.
I decided on AS in part to avoid the side effects of radical treatment. In reading the literature I came to the conclusion that the incident of side effects is greater than that admitted to by most Urologists. In addition RRP is major surgery and has the risks inherent with surgery.
There are risks with AS. The regular check-ups can be uncomfortable as well as the risk of infection from a biopsy (which I was unlucky enough to experience first hand).
Once diagnosed with this disease, there is no perfect treatment or cure. Any path has risks, side effects and possible adverse outcomes. Each person needs to decide which path is best for them. We have chosen this path and for us it has been the right path. As time goes on and advances are made we may change our direction.
It has been a while since I updated my story.
We have been busy with several projects and my Active Surveillance has been going well so far. Since I joined the AS study in 2009, my PSA has fluctuated. Right after entry it hit a high of 3.55, then dropped to 2.87. It slowly rose to a high of 3.54 in about a year's time, then the last PSA was 2.71.
I have my PSA checked every three months and a DRE every six months. My urologist has not noticed any change in the DRE. I was supposed to have a biopsy at the one year mark in August of 2010 however the protocol had been changed and an annual biopsy was not required. I am supposed to have one this year in August but since my experience with the entry biopsy I am not sure if I will go through with the biopsy.
During the last year there was one event that caused me some concern. The lab had changed the PSA assay method about three tests ago. I questioned my Urologist and wrote to the hospital administrator expressing concern over such a change and my feelings. I had the chance to talk to the head of the lab. He assured me that they had run duplicate assays for 3+ months prior to the change had calibrated the two assay methods. He felt confident the results across the change were comparable. He also stated that they would not be changing methods for the foreseeable future.
To date things have been going well with the Active Surveillance. I have no plans to change unless there is a significant change in my numbers or recommendation from my Urologist.
It has been about a year since I last updated my story. I am happy to say little has changed since my last update. I have been in AS for about 2 1/2 years now. My PSA test results have been inching up slowly but still are within my "normal" range. The latest is 3.71. I am still happy with my decision and have not revisited it at all.
The AS protocol for the study has been modified a bit. I now have PSA/PCa 3 tests and office visits with DRE's on a semi-annual basis. The biopsy requirements are now every two years. In my case and due to my 5-day "vacation" in the hospital as a result of my last biopsy, at this time they intend to do a biopsy all if warranted by a change in something that would warrant a new biopsy. That is fine with me. If I have to have another one, they are talking about putting me in the hospital the night before and plying me with IV anti-biotics due to my previous experience.
It doesn't seem like a year since my last update, I am still on AS. I have kept active with our local UsToo chapter, attending meetings and keeping up to date on current trends and treatment for PCa. There have been a lot of new drugs made available and just very recently a gene test has entered the market.
At my last PSA test (about three months ago) my PSA had jumped to 4.3, the first time it has been 4 or greater. In talking with my urologist there may have been some factors that caused it to rise such as having just been at the gym. We decided to wait about three months and have it taken again (instead of the usual 6 month interval). I will be going in shortly to have it checked and will update my story when I have the results.
They have updated the protocol for the AS study. They now require and MRI prior to a biopsy. So if a biopsy is indicated due to the change in PSA I get to look forward to an MRI, I am claustrophobic and the thought of one is unnerving, as well as look forward to the biopsy and hope that it is not a repeat of last time.
Things have gone well this past year and I still do not regret my decision to follow active surveillance. Occasionally I think about it but am glad I have not had any side effects or consequences of treatment. I do however keep up to date on changes in treatment and think about what I might do if treatment is indicated. I have been in the program for almost four years and have been able to enjoy retirement.
I will update my story as things happen.
I have been slow in updating my information. After the rise in PSA I had one at 3 months, then another at 6 months. They showed a decreasing PSA with the latest at 3.97. The DRE at 6 months was normal, no change. With the increase in PSA and a slightly elevated PcA3 test I was a bit nervous. It had been 4 years since my last biopsy, the AS protocol was every 2 years. The delay was due to my previous unfortunate experience with a biopsy.
In addition, the hospital had a new Tesla 3 MRI that was supposed to show areas of interest and probable cancer. They had a system in which the Dr. could superimpose an image of the MRI and use it to guide the biopsy process. Given the above, I talked to my Dr. and we agreed that it was time to do another biopsy.
I survived the MRI. I am really claustrophobic but they told me I would have my head out during the procedure. I guess my interpretation of head out was not the same as theirs. However it was close enough to the opening that I could see the ceiling and did not feel completely enclosed. It took about 45 min.
For the biopsy I received a fairly strong anti-biotic ahead of time. I also needed to show up about 1 hour prior to the procedure to receive two anti-biotic shots. The extra precautions were due to my previous experience. They precautions worked, there were no complications from the biopsy.
The results however were inconclusive and I am not sure I fully understand them. In all the cores there was not any malignancy found. In one core there was some suspicious cells found. The report says that malignancy cannot be definitively confirmed however that is another part that seems at odds with that statement. I have a question in to the Dr. to clarify. At any rate it is just one core and a few cells.
Bottom line, the Dr. does not see any reason to stop AS and I will be on AS going forward. If I get clarification on the results and/or at my next appointment I have a better understanding I will update and hopefully clear up the confusion.
It has been a bit since my last update. I continue on Active Surveillance. According to my doctor, the results from the biopsy indicate that things are stable and to continue on AS. I currently see my doctor twice a year. Earlier this year my PSA was 3.98, in my last visit in September my PSA was 3.68. Things are stable.
We have moved out of the Chicago area finally. I still plan to see my doctor in Chicago twice a year and stay in the AS study for the foreseeable future. In looking back, I have been on AS for better than 6 years now. In that period of time I have been stable with my PSA and have not had to have any treatment or to deal with any of the side effects. Things have gone well. The most I have gone through is the week in the hospital as a result of a biopsy. The latest biopsy went well and confirms that I can stay the course.
In looking back and thinking about that day I was diagnosed and the events that brought me to my current state, I am really glad that I, with my wife's help and support, I turned to face the situation, obtained second (and third) opinions, and did research instead of blindly following my original urologist's direction. If I had followed that recommendation, I would have had surgery and could be facing the resultant side effects and complications. There have been times I have had a few second thoughts. Living with the cancer is not a normal situation. However I have support from my wife and my current urologist and as time goes on and things stay stable, it gets easier.
One other bonus from my decision, I have kept up with the evolving landscape of treatments. The range of different treatments and the advances have been great. Should I need to seek treatment my options today are much better than 6 years ago. I expect that to only increase as time goes on.
That's about all for now. I will endeavor to be better about updating.
I have continued on active surveillance. About a year and a half ago I had a follow-up biopsy that showed about the same status, that there had not been any change. The good news was that I did not develop an infection afterword and end up in the hospital.
The not so good news is that the hospital that I have been going to has decided in their infinite wisdom (and probably for financial reasons) to change the assay method used. They did do a short period of using both methods to try to set a base line however there was only one test duplicated so there is not enough for a baseline.
I have been putting off another biopsy that is part of the protocol, however since the change in the assay method and the rise in PSA I may have to rethink that position.
It has been 8 years since my initial diagnosis of PCa, it seems to have gone quickly now. At my last appointment my PSA has remained fairly stable at 4.0. In the meantime we have moved down state. I am comfortable with the practice, doctor, and study I have been in and continued with the group. It requires a several hour trip and an overnight stay. I do though get a chance to visit with my sister and her family. The appointments are twice a year so it is not too bad.
At my last visit last fall, my doctor was pushing a bit to get me to agree to a biopsy. I am somewhat reticent based partly on previous experience and deferred a decision until my next appointment. It has been two and a half years now since my last one so I most probably need to have one soon.
My last biopsy was an MRI guided biopsy that had pinpointed the hot spots. It found nothing. Not the first time this has happened. Years ago when color Doppler was the hot thing that could identify where the cancer was. The doctor found the hot spots and found nothing. I have had two regular biopsies that have identified the cancer as read by at least three different pathologists so I know the diagnosis is accurate.
I will not be able to have an MRI directed biopsy this time fortunately, I am not a fan of enclosed spaces. Since the last biopsy I have had a hip replacement and that for some reason invalidates the MRI needed for the biopsy.
My next appointment is in a couple of weeks. I will know more then and will update my story after the appointment.
I had my 6 month regular appointment. Everything was as is, no changes. The DRE was fine. The PSA was 4.95 (using the Roche platform), 6 months ago it was 4.55. It had been as high as 6.06, all wit the the same testing method. The Dr. has backed off some from wanting another biopsy, it has been 2.5 years since the last one. For now I will probably not do one at least until my next appointment in March. I continue on AS and feel good about my decision.
It has been a year since I have updated my story. In looking things over, it has been 9 years since diagnosis and 8 years I have been in Active Surveillance. Speaking of which I am, disappointed in not seeing AS in the list of treatment methods. It is a distinct treatment option that more men are following. [It is listed as one of the treatment choices under "Non-Invasive"]
My last appointment was two days ago. The results are still the same, no change and still on AS. My PSA at the time was 6.1. It has been slowly increasing over the last year and a half, from 4.95 to 5.58 to 6.1 from the recent test.
We have been going back and forth about a biopsy. This last appointment I decided to go ahead with a biopsy. It is scheduled for early November and I will post the results when I get them.
I have been reluctant to have a biopsy due to having developed a blood infection two biopsies ago. The last biopsy in addition to regular antibiotics I received two shots. I did not have an adverse reaction the last time. They have changed procedures this time. They took a rectal swab and cultured it for bacteria. They did not find any bad stuff they were looking for so I will be following the regular protocol. When it is done and I get the result I will post results and how I survived.
It has been 9 years since I was diagnosed, following AS the whole time. I am pleased with my decision and happy that is what I choose. Feel free to email me if any questions.
Time flies. It has been 10 years now since my original diagnosis, seems like only yesterday. Not much has changed. Still have twice a year appointments. My PSA had climbed slowly to about 6.5, then the last test came in at 3.92. Not sure why the drop in the PSA, will wait until the next appointment and PSA test to see if it was a fluke.
It has been a while since I updated my status. I have been on active surveillance since November 2008. I followed AS as part of a study out of NorthShore Hospital outside Chicago. We had moved to the St Louis area about 4 years ago and I recently moved to BJC/Washington University.
In the last year my PSA has been rising. I recently had an MRI which showed a rather large possible tumor. The biopsy showed 4 cores positive, one 4+3 and 75%, two 3+3 around 50%, and one 3+ 4 at 5%. Based on these results, it is time to move to treatment. The results occurred just before leaving for a 14 day cruise in the South Pacific. My wife talked to the nurse we had known at NorthShore and she suggested a book to read that could help in the decision making process.
I downloaded the book to take on vacation and read it while on vacation. The book is Dr. Patrick Walsh's Guide to Surviving Prostate Cancer by Dr. Patrick Walsh (Full disclosure, I have not seen Dr. Walsh nor been a patient at Johns Hopkins). The book is well organized around treatment types, PCa information and side effects. It can be read in part or the whole. I read the book completely. It helped me get my head around the information and put a plan together for our return. I would recommend the book highly.
When we returned I had appointments set up with a surgeon and a radiologist. Even though we have since moved to Florida I continue to come up to St Louis and BJC for treatment as it is one of the centers for excellence.
From the MRI it appears the tumor is organ confined and the lymph nodes do not show sign of involvement. After reading the book, meeting with the doctors, and discussing with my wife, I have decided to proceed with surgery.
Laparoscopic prostatectomy surgery is scheduled for tomorrow. People have asked me why not DaVinci. From my readings I've learned and I believe it is most important to select the surgeon and not the technique. There is a discussion in the book about choosing a surgeon. Things to consider include the center where surgery is to be done as well as the experience of the surgeon. There was a study done of surgery and bio-medical reoccurrence of cancer. The numbers of surgeries plotted against reoccurrence indicate surgical experience is important. I feel confident in the surgeon and his approach to the surgery. The method he uses is of secondary concern for me.
After surgery I will continue to post about my recovery.
I had the surgery on March 2nd. It went well. I needed to be in the hospital one night and was released the next day. I had a catheter for a week both a literal and figurative pain. Yesterday I had it removed.
The typical effects so far. Incontinent, quite bad initially but seems to be improving now. I received the biopsy results from the surgery yesterday. I could not have expected better news. The lymph nodes were negative as was the edges of the prostate. Clear margins and no sign of the cancer. The cancer was confined to the prostate and was pretty much as expected..
Yea.
Next big step is a PSA test. Six weeks after surgery I will have a PSA test done and fully expect it to be 0.
Going forward the next steps are to gain control over urination and develop some potency (defined a an erection, no more kids in my future thank goodness). We will see how things evolve over time and I will update as needed.
I had been on active surveillance for 11 years. One question I get is do I regret AS and wish I would have had the surgery initially. Looking back I had all the information available and made the best decision for me at the time. I also look at the fact that I have had 11 years free of side effects, 11 years of advancement in treatment, understanding, and experience for my surgeon. No regrets.
I believe my email is available if there any questions.
It has been almost a year since surgery. Over all it went well. In September an MRI found a lingual hernia. Late September I underwent surgery. Because of the extent of the hernia the surgery was an open procedure.
So far my PSA tests have been undetectable. There is some incontinence. I am dry through the night. During the day there is leakage, particularly stress incontinence when I am up and walking around. I go through about 2 garments a day.
Not much to update. After LRP early 2000 I have had some incontinence. Not sure how to characterize, Not major but stress incontinence. Varies up to 200 ml per day.
PSA has stayed at undetectable so far.
Not much to update. I continue to be undetectable so it is a matter of regular (semi-annual) PSA tests. I have been working with klegel PT and it has helped some. I have looked at a surgical solution however I am not keen on more surgery, had 4 major surgeries after the RP. Two for hernias the other 2 not related to PCa. Still thinking about it.
Geoff's e-mail address is: eitherofus AT gmail.com (replace "AT" with "@")
