Four months before turning 40, I started getting frequent dull headaches accompanied by dizziness and equilibrium problems. After suffering for several weeks I finally reached my breaking point and visited the ER. The ER docs gave me pain meds and suggested I make an appointment with my primary to and investigate sinus infection. Primary doc prescribed antibiotics and then referred me to an ENT for further investigation. ENT doc conducted several labs/tests and referred me to neurologist. Neurologist diagnosed me with chronic cyclical migraine and prescribed tricyclic antidepressant to reduce frequency and hopefully "break the cycle." While I accepted the neurologist diagnosis I simultaneously began evaluating alternative therapies for headaches.
This brought me to an endocrinologist and naturopath, both suggesting clomid for hormone therapy with the hope that increasing my low testosterone would alleviate my headaches. Both ordered a PSA test before proceeding which initially measured 2.2, but despite being made aware I was taking propecia (Finasteride) for several years, they failed to realize the normalized PSA would have been closer to 4.4. I began taking the Clomid and simultaneously visited a urologist to investigate frequent urination and consider any potential correlations with headache. The urologist was the first to advise me of the elevated PSA and ordered a 4k score test which came back suggesting I had a 18% chance of having aggressive prostate cancer. Although my father had prostate surgery at age 51, I was rather shocked at the possible PCa diagnosis at age 40. I was then referred to UCSF for a 3T prostate MRI which found a clinically significant likely cancer lesion T2a. A week later I was back at UCSF having a prostate biopsy and several days later I learned that I had 8/18 cores test positive for cancer with Gleason scores of 3+4 and 3+3. My initial instinct was of a combination of fear and sincere gratitude at catching this disease and having an opportunity to treat and be cured. Within days I received a copy of the biopsy report and was then spooked to learn there were several cores with Perineural invasion present. Instantaneously I feared my aching legs were a sign of metastatic disease and my anxiety skyrocketed at the thought of leaving behind my beautiful pregnant wife and two young daughters.
After meeting with Dr. Carroll at UCSF and learning about the successful nerve sparing robotic assisted radical prostatectomy procedures pioneered and perfected at UCSF, my wife and I were confident this was the correct choice for our unique circumstances. To be thorough in our analysis we also met with Dr. Mack Roach at UCSF to learn more about radiation therapies available. We found Dr. Roach to be very informative wiht deep expertise that we would not hesitate to be treated by but ultimately decided that surgery gave me the greatest chance of a cure. Approximate 4 weeks later, yesterday morning, I underwent surgery. The UCSF team were incredible and have suggested the surgery went very well. They were able to complete a bilateral nerve sparing surgery and also remove the nearby lymph nodes as a cautionary measure despite no visual signs of lymphatic disease present. I was able to go home the next day with Foley catheter and some pain medication. I have a follow up appointment in 8 days to remove the catheter and review the pathology report. More to follow
Today is Post Op day 15 (surgery day is not included). I am happy to share that I'm recovering from surgery better than I expected, but the last 15 days have been no walk in the park. After consulting with several members of the UCSF urologic surgical oncology team, the UCSF radiation team, several personal M.D. friends and a few prostate cancer survivors about treatment options, my wife and i decided the radical robotic assisted prostatectomy gave me the greatest chance of a cure. We came to understand that the patients outcome and level of success was directly correlated to the skill of the surgeon. With great confidence that Dr. Carroll at UCSF was among the nations most skilled surgeons having performed thousands of these procedures (and perfected the nerve sparing robotic surgery) and that should additional treatment be required (radiation or chemo), UCSF was where I wanted to be treated. Since surgery was scheduled within days of receiving the biopsy pathology results and prior to our pre-op follow up appointment with Dr. Carroll, my surgery was delayed for a week to allow the post biopsy inflammation to improve the surgical success factors. On 1/10/17, I showed up at the hospital as scheduled at 630am for 7:30am surgery, eager to begin this process. I was really impressed with everyone i came into contact with at UCSF and the efficiency I witnessed from check-in to surgery gave me further confidence i was at the right place. I was especially grateful that the surgical front desk staff went out of their way to treat my wife with compassion and offered to keep her comfortable and informed while I was in surgery. Thankfully she was allowed to wait with me inside the surgical waiting area as I laid on the hospital bed in gown and met each of the surgical team members one by one before they wheeled me back to the operating room. Honestly, I hardly remember being in the operating room for more than a few minutes before beginning a very comfortable sleep and then waking up in the recovery area with my wife and mother in law at my bedside and experiencing an incredible sensation to urinate. My wife explains that I repetitively told everyone within a short distance that "I needed to pee like a race horse". I guess i was a broken record, but I don't really remember much. Of course I was feeling the unfamiliar initial sensation of the catheter. Little did I know how well I would come to know life with a catheter. In a short while, I was wheeled up to the most beautiful private hospital room with large screen TV and views of the SF Bay Bridge. The nursing staff kept me very comfortable on IV pain meds and regularly came in to give me additional meds I took by mouth, juice/water to treat my severely dry mouth and empty the catheter bag. They also regularly came in and gave me shots to reduce the chances of blood clots but with all the pain meds I was on, and distracted by the gas pains, incision pain and soreness in my perineum area, the shots were a non issue. Surprisingly, by 12 noon the following day after taking a couple of successful walks down the hallway, I was discharged. The drive home from SF (full of pot holes) was pretty uncomfortable but i was happy to be in my own bed. The first couple days home continued to be a blur of occasional short walks through the house, small meals, emptying the catheter bag, and severe constipation. I would have paid big money just to let out a fart. Since the nursing staff advised me that the narcotic pain medication was constipating, I decided to stop those drugs immediately and relied on rotating ibuprofin and tylonal around the clock. Thankfully this led to my first bowel movement on post op day 2 and that was a defining moment in my recovery. As the gas pains lessened, I was able to move more and I think it is critical to get up a move around regularly. The majority of the first 9 days revolved around the catheter they sent me home with. Until the catheter was removed, there was not much more to share, just more of the same. Although I never thought it would come, post op day 9 was a great day. Having the catheter removed was amazing. I guess the removal was a little uncomfortable for a second but I was so ready to have it removed I never even noticed. Life after catheter removal was another defining moment in my recovery. This greatly improved my mobility and I began to feel better quickly. One of the scary aspects of having prostatectomy is the incidence of ED and incontinence. Surprisingly, I've had very little trouble with ED. In the 14 days following surgery I probably experienced 10 spontaneous erection without ED medication. I mentioned this to the surgical team and they cited my age and the success of the nerve sparing surgery with amniofix place on the nerve bundles during surgery. They had sent me home with ED meds and prescribed a small dosage to start the first week. I asked to delay that for the time being in fear of having the dreaded 4 hour erection mentioned on so many Viagra TV commercials. Unfortunately, ive not been so lucky with incontinence but I am making major improvements each day. The day I had the catheter out I had very little urinary control and today (5 or 6 days later) I am only using 2 pads per day for regular but slight leakage, especially if I laugh or cough.
The most important news I can share came yesterday when I received my final pathology results. Despite the cancer being higher grade and further along then expected, the cancer was completely contained in the gland with no positive margins and my lymph nodes are cancer free! Praise God! Thankfully i was able to discuss the negative findings with the doc by phone and come to realize that they become much less of an issue since the cancer was contained in the gland and the gland is removed. They also affirmed my decision to have surgery as I have good reason to hope this surgery was curative. My next follow up appointment is in early March (6-8 weeks post op) when I will follow up with the UCSF team and I remain hopeful my PSA will become undetectable. I will report back.
Its been nearly 7 months since surgery. I'm happy to share that my 3 month and 6 month post-op PSA was undetectable. The genetic decipher test performed on the pathology did come back as high risk for recurrence and suggested I consider radiation. Dr. Carroll has ordered some additional information from the test and was optimistic that this may not be necessary. He will be introducing me to a radio-oncologist in any event and moved up my periodic PSA testing from 3 months to 2 months. I'm glad to be more vigilant.
I met with the nutritional consultant at UCSF and was encouraged to eat a plant based diet and virtually eliminate eggs from my diet. I was unaware that eating eggs was correlated to prostate cancer. I've made many positive changes to my diet, but still have a wicked sweet tooth.
I also met with a genetic counselor and had some extensive genetic cancer screening performed. As it turns out, I did have a genetic mutation (RAD50) but there is not a significant link to prostate cancer. There is a link to breast and ovarian cancer which is an advanced warning to my two daughters.
I'm certainly not so far away from this to be "looking back" yet, but to my surprise, I'm beginning to see how this could turn into something positive in my life someday. The sleepless nights worrying and severe anxiety that I've suffered, I wouldn't wish on anyone. But the clarity of what's most important and gratitude for moments of grace are re-shaping my heart. I hope to share more about this over time.
By the way, we just welcomed our third child (a son named after my deceased dad and father in law, John Mitchell). What a miracle to get pregnant before surgery and have a child 3 months post op! Praise God! I've got a lot of motivation to be healthy and vigilant.
Brian's e-mail address is: baddington24 AT gmail.com (replace "AT" with "@")