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.
Geoff's e-mail address is: eitherofus AT gmail.com (replace "AT" with "@")