I was found to have an elevated PSA of 5.7 in July 2009 while being treated for Lyme disease. In August 2009 my PSA dropped to 0.7. During a routine physical and follow-up PSA in April 2010 I had another elevated PSA of 4.5. I followed with a DRE (Digital Rectal Examination) - nothing palpable and was treated with Ciprofloxin and retested with a resulting PSA of 4.8 and a free PSA of 12.1%.
My urologist then recommended a biopsy which I had in October 2010. My PSA at that time was 5.2. The result was a prostate cancer diagnosis with a Gleason score of 3+3=6, Type 1a, 32 gram prostate with less than 5% cancer in one core and another core showing atypical cell growth. The urologist recommended a meeting with both a surgeon and radiation oncologist to decide the best individual treatment option. I also submitted my biopsy slides to Johns Hopkins University for a second opinion pathology report which confirmed the first pathology and also noted a separate area of high-grade PIN (prostatic intraepithelial neoplasia).
I completed my meetings with both the surgeon and radiologist in November 2010. I am now trying to better educate myself on the considerations and side effects given my individual situation and medical history.
During my education experience and consultation with my doctors. I had two follow-up actions.
1. My surgeon felt that due to the fact that I have sleep apnea and a high BMI, I was a higher risk surgery and needed surgery done by his mentor who has a broader range of experience and could do the surgery at a hospital center better able to handle higher risk patients. I do not wish to have surgery as a high risk patient. Since I considered surgery still a viable option, I had a physical with stress test and echocardiogram and was cleared to establish a fitness routine to improve my BMI to reduce my surgery risk. I joined a health club and have been exercising regularly with good results.
2. The oncologist consult wanted me to have several tests to ensure I had no obstructive problems because I had several stricture surgeries as a youngster. I had read that if one went the radiation route and had stricture problems, the radiation treatment could worsen the situation and it was best to have corrective surgery before radiation treatment. Therefore, I had a flow test with borderline results and my urologist suggested I have a cystoscopy to rule out any problems and ensure I would be able to have a catheter without any problems. This exam has been temporaily delayed due to me recently being in an automobile accident. So the bottom line is that I have not yet decided on the treatment route to take, but continue on a path that would enable me to follow either path.
I finally had my cystoscopy July 13. The anticipation was much worse than the 10 minute procedure itself. I had a local and just felt some mild pressure. I watched on the camera as my urologist explained what he was seeing. The good news was that I did not have any strictures or obstructions that would limit the use of a catheter.
Now I will schedule a consult with the surgeon who is one of the most experienced Da Vinci surgeons in the area.
I visited the surgeon recommended to me in October. He has performed approximately 1300 prostate removals. He said he said he has not seen any significantly increased morbidity in operating on larger patients at the hospital center. That is how he phrased it in his report, but when discussing it with me he said he saw no problems in doing the surgery on me despite my sleep apnea and BMI. He said the anesthesiologists at this hospital center were used to working on larger patients as they also do many bariatric surgeries. The operation might be a bit longer. Losing weight would make the operation easier, reduce the risk of infection, and improve the speed of recovery after surgery.
According to him, the PSA is not as good of an indicator in larger patients due to dilution. He expressed a concern about radiation for me due to the risk of secondary cancers down the road. He recommended a second biopsy to monitor progress if I did not plan on surgery soon.
The next week I had another PSA, DRE, and discussion with my urologist. My PSA was up to 8.0. DRE was unchanged. My urologist said he did not recommend another biopsy if I planned to eventually have surgery as a biopsy is not risk-free and the outcome would likely not change my decision. He said if I wanted to try to lose some weight, we could see how that goes, have another PSA in 4 months and decide then.
I have now joined a weight loss group at my fitness club which involves working with a personal trainer for weight loss through increased exercise and diet. It seems my fitness level is improving but the weight loss seems very slow.
At this point, the surgery and post surgery risks for me outweigh my desire to be rid of the cancer and know about it's pathology. If I decide on type of treatment, it is more likely to be surgery.
In February 2012 I had a medical problem which in retrospect I am glad happened. I had DVT and bilateral PE of the lungs following a long international flight. After hospitalization and treatment I decided to keep an appointment with a nutritionist in my physicians practice. After minimally reducing carbs and fats and keeping a diary of carbs/fats, I have been losing at the rate of 3+ pounds per week. No gimmicks, no shakes, no severe restrictions.
In March 2012 my PSA had climbed to 13.3 and I was also having some difficulty starting urination and weak stream. I visited my urologist and DRE was unchanged and he put me on Tamsulosin. I will have another checkup in 3 months. The Tamsulosin improved my urination.
My weight loss will put me at a safer weight for surgery in August/September.
Although my weight loss slowed, it has continued steadily. I have never gained during any of my monthly weigh-ins. I have now lost approx 70 pounds and have a call into the surgeon to schedule surgery. My PSA is at 10.9 and I suspect it may have been higher before as that exam was done someplace different. The Flomax has helped, but urination is still slow and the urologist says that the flow is slowed from the prostate acting as a blockage.
I had my surgery 10 days ago. The recovery progress has been fantastic. During surgery they also repaired an umbililical hernia. I had minimal pain the first night and none since. I did have a few bumps in the road related to blood clots (I am on anticoagulants) that required a few irrigations of the catheter , so I was in the hospital 3 nights. ) I feel my urinary control improves daily and only seems to be a small amount when I laugh or turn sideways.
I was very happy with my treatment by the team at the Washington Hospital Center.
The pathology report was not what I wanted. On the plus side there was no seminal vesicle or lymph node involvement, on the downside there was multiple positive margins, a higher grade of cancer at Gleason 4+3 than the biopsy, a higher degree of involvement of the prostate at 50%, perineural invasion, and extraprostatic extension of the bladder neck.
I will visit the surgeon again in 6 weeks and he is advocating radiation therapy.
So now I renew my education process and read as much as possible to be able to once again, make the choice that is best for me.
I met with my radiation oncologist (who is also a urologist) November 20 and he made his recommendation and answered all my questions. We talked for about an hour. He said I was the earliest patient he had talked to after surgery (mine was 3 weeks ago). I will know my first post surgery PSA in one month.
His recommendation is for me to start radiation after I have regained full urinary control and he said that is normally around a three month period or so. He said waiting until you have full urinary control is very important. He said that an alternative is to wait for detectable PSA or PSA rise, but that in my case, he did not recommend that. He said one of the adverse elements he was concerned about in my pathology was that the cancer cells were non-focal and he put my risk of recurrence somewhat higher than the 69% the Johns Hopkins post-surgery table suggested- more like 80-85% within 10 years.
The treatment discussed was IMRT using the Elekta Axesse system. Seven weeks, five days per week and 25 minutes each session, 70 grey. He also discussed the possible side effects and suggested the risks are in the single digit % range. He asked me to keep the idea of ADT/hormonal treatment open as we might need to discuss it further after I have my first PSA test next month. I plan to read up on the possible side effects of this.
He also mentioned the same studies and models I had used: Sloan Kettering Nomograms, as well as the SWOG, EORTC, and German studies all referenced in the NCCN Guidelines which I used as my basis for guidance.
This treatment center is in the suburban Washington DC area and is integrated with Johns Hopkins. It is also 10 miles from my home.
I have completed 30/38 treatment sessions. I think so far, things have been pretty stable in that my side effects so far have been minimal. Some increased nighttime urination and minor occasional burning upon urination and just recently began to feel a small amount of fatigue. I hope that things remain stable.
It has now been about 3 months since completing my treatments. I ended up with 39 treatments as they added an extra one at the end. I feel I tolerated things very well and did not feel any significant side effects. At about 45 days after the end of my treatment I had another PSA test and it was undetectable/0.
I have continuing minor fatigue. It is not the normal type of fatigue and does not limit me real time, but my body needs rest. I sit in a chair in the afternoon and take a short nap. I am following their advice on good nutrition and light to moderate exercise and that seems to help. But it is still there and as I understand it, it can last a while depending on the individual.
I finished my radiation treatments end of April 2013 and am being tested every 3 months. My most recent test was undetectable.
My most recent test this month was undetectable. After my next test in December, I will go to an annual test to monitor my PSA. I have not had any other problems or complications.
I am now tested on an annual basis and whenever I have a physical. I continue to have undetectable results. I am satisfied that I went for the more aggressive treatment.
I continue to have annual PSA tests and they continue to be undetectable. That is good news.
Mike's e-mail address is: adman411 AT hotmail.com (replace "AT" with "@")