My name is Scott, and I am 45 years old. Last week, I received a diagnosis that I have prostate cancer, and that it is categorized as "very low risk". The Gleason score is 3+3=6, and the cancer has been initially staged as T1c.
We discovered the cancer as a result of regularly PSA testing and three biopsies over the last 3 years. During that time, my PSA has steadily climbed from 3.9 to 7.8. My urologist conducted two transrectal biopsies (one in 2012 and one in 2013), and both were negative. Based on my most recent PSA, and a PHI score of 61, we decided to pursue a saturation biopsy (also known as prostate mapping). There were 40 samples taken, and 5 of those were positive for prostate cancer.
I am currently awaiting the results of a secondary review of my samples through Johns Hopkins.
My wife and I met with the doctor a few days ago regarding treatment. He's recommending that I consider both active surveillance and surgery as viable options. My choice is complicated to some degree by my age. The good news is that we've detected it early. That said, I am concerned that side effects from treatment will be with me for what I hope is a very long life. On the other hand, there is a school of thought that says that those who are younger can often mitigate side effects more easily. I'm not a person who likes to live with major uncertainty, so my inclination is to actively pursue surgery. But I need to take my time with this decision.
My next step is to ask my doctor to send my samples out for the Oncotype DX genomics test. This will search for any indications at the genetic level that I may be predisposed for this cancer to grow aggressively (or not). These results will give me additional data as I look to decide between surgery or active surveillance.
I'm still in the process of deciding between active surveillance and robotic surgery. Today, I received a second opinion on my most recent biopsy samples, and there were subtle differences in the pathologists' interpretations. The second opinion still has me at a Gleason Score of 6, with a staging of T1c. However, the pathologist at Johns Hopkins found tumorous material in 3 out of 40 samples, with a greater percentage of each core showing cancer.
I'm still having the samples sent out for genetic testing, and I've got an appointment for a second opinion with Dr. Joshua Meeks (Northwestern Hospital, Chicago).
I'm reading other men's stories on this site, and talking to others who I know who've gone through treatment. Not surprisingly, I'm finding both assurance and horror stories, in roughly equal measure. But at this point, it's all data. And the more data I can sift through, the better.
I don't need to make a decision immediately, but I feel like the next 3-4 weeks will be a time of continued research that will lead me to a treatment decision.
It's been a busy couple of weeks, during which I've received the results of my genomics test, and met with another urologist for a second opinion. The genomics test was run to determine the likelihood of my cancer growing at an aggressive rate. The results use a score of 0-100, with 100 indicating a higher risk of aggressive growth. My score was 20, which puts me at the low end of the "low risk" category. (The categories are "very low", "low", "intermediate", and "high"). The test essentially confirmed that I'm a candidate for active surveillance, and that, if I decide to have surgery, I have time to make a decision about a surgeon and then schedule the surgery at my convenience.
I met yesterday with a urological oncologist at Chicago's Northwestern Memorial Hospital. He confirmed what I'd heard from my urologist - that my most likely treatment options are active surveillance and robotic-assisted surgery. This doctor not only answered my questions from a physical perspective, but also addressed the psychological and emotional aspects of the decision. He essentially acknowledged that active surveillance isn't for everyone, and commented that, having had PSA tests and three biopsies over the last five years, I've kind of been doing active surveillance already. The big difference is that I wasn't diagnosed until a few weeks ago.
My wife was with me at yesterday's appointment, and she and I are in agreement that I'm going to have the robotic surgery. I find that this diagnosis is very much on my mind, and I can't imagine that more time is going to change that. I'm of the mind that we've detected this very early, and I want to get it while it's in its early stages.
The next step for me will be to find a surgeon. The doctor that we met with yesterday is a front-runner for that. I'm really comfortable with his approach. But I want to talk with 2-3 of the patients that he's worked with in the past, and I want to talk to 1-2 other surgeons as well. As is often said, I only get one shot at this, so I want to do my due diligence. But I did comment to my wife yesterday that the other surgeons I meet with will be compared to the one I met with yesterday.
All in all, I'm in a good place. I have friends and family offering their thoughts and prayers, and I know I'm not alone as I make these decisions.
I'm in the final days of my decision-making, I believe. I've decided on robotic prostatectomy, and I've been meeting with surgeons to determine which program will be best for me (and my family). Next week, I'll meet with Dr. Helfand at NorthShore University Medical Center. He's come highly recommended, with one of those recommendations being from a mentor that I contacted through this site. The biggest differentiator for Dr. Helfand seems to be the multi-disciplinary approach that NorthShore uses with all of its cancer patients. They have a dietician, a nurse specializing in rehabilitation of sexual function, and others who are committed to ensuring that my post-operative recovery goes as well as possible.
I've also met with Dr. Meeks at Northwestern Memorial Hospital. While that center does not employ the same multi-disciplinary approach, I do believe that Dr. Meeks and his nurse are committed to providing that same level of care. I just think that they manage it differently. I've been impressed so far with Dr. Meeks' responsiveness and willingness to listen to my concerns.
The fact is that I'm blessed to have this choice. I believe that either doctor would do a fantastic job with the surgery, and I think it's ultimately going to come down to a sense of comfort with the team that I'll be working with. My intent is to schedule surgery with one of these doctors at the end of next week, then focus on getting myself prepared for surgery in mid-August.
My wife and I met with a second surgeon on 6/4/15, and I've decided that he and his team are the ones that I want to work with for my treatment. I've decided on robotic-assisted laporoscopic surgery, and the thing that really helped me to decide on Dr. Helfand is the team that he's assembled, who will be working with me before and after surgery. I'm confident that the surgery and the after-care will help me to manage side effects, and his track record indicates that, given my age, there's a high likelihood of side effects being minimal, if not negligible.
My wife and I attended a lecture at the hospital on diet and nutrition for prostate cancer patients. We're still working together to learn as much about the disease, treatment, and recovery as possible. That said, it's a relief to have a firm course of action.
Now I'm just waiting for the end of August for my surgery. There are a few appointments between now and then (pre-op check-up, meeting with the nurse who'll be working with me on penile rehab, etc.). But August 26th is the big day.
My robotic-assisted laporoscopic radical prostatectomy took place on 8/25/15. Since then, I've been at home recovering. I'm very pleased to report minimal side effects at this point, two weeks after surgery. In terms of urinary incontinence, I notice that if I push myself too hard during the course of the day, I have more difficulty with squirts and spurts in the evening. But Kegel exercises are helping that, and I'm being patient with myself. Regarding erectile dysfunction, I've been very blessed. Bloodflow is regular, if slightly weaker than before the surgery. But that is getting stronger as days pass, and Cialis is definitely a help during these early days.
My post-surgery pathology report came back indicating an elevated Gleason Score, and an elevated staging. I can't say enough about how thankful I am for early detection.
I'm tremendously fortunate to be working with an excellent surgeon and his team. I'm looking forward to that first PSA test (at the end of September), and to getting on with life after prostate cancer.
It's been thirteen months since my robotic-assisted laparoscopic prostatectomy. Since that time, I've had five PSA tests, all of which came back as undetectable. I regained full continence quickly, experiencing a small amount of leakage in the first couple of months when I would cough or sneeze. I consider this an enormous blessing, and I believe that it had everything to do with being diagnosed early (at age 45).
Regarding sexual function, I selected a surgeon who works with another doctor who specializes in working with men to manage side effects and return to a good level of sexual function. That doctor has been fantastic, and has helped me to mitigate side effects through the use of Cialis and regular (daily) stimulation. Over time, I've been weaning myself off of Cialis, and have found that I am able to get and maintain an erection whenever I'd like. In recent weeks, I've found that I'm even regaining some ability to gain a partial erection without manual stimulation, solely through fantasy and thought. So the nerve sparing component of the surgery was successful, and I'm looking forward to continued recovery in the future.
Scott's e-mail address is: firstname.lastname@example.org