Posted 7/18/2017 10:04 AM (GMT -5)
I’ve reached the one-year anniversary of being hit in the head with the sledgehammer and at this point, I really have nothing to complain about. My mental state is far better now than it was a year ago after getting the news. I want to share my update with you all who have helped me so much during this process so far, but also hope very much that my story can help some of the new guys that are feeling that initial crush feel a bit better about the future. Admittedly, this is a bit long but I hope that the details will make my story more useful.
A quick run-down – last year at this time I went to my primary care doctor for my annual check up. Since I turned 50 last year, I asked my doctor about what tests I should have. I knew a colonoscopy was recommended at 50 and had read that that PSA test is often suggested as well. My doctor was onboard with the colon screening but when I asked about the PSA test he asked if I had any history of PCa in my family and whether I had any symptoms. My answer was “no” to both. He said that in my case then he saw no reason for a PSA test. I asked what the PSA entailed. When he told me it was a simple blood test it blew my mind. I was going to have my blood drawn during that appointment anyway as part of the yearly physical, why the hell wouldn’t I include PSA? I insisted, it was done, it came back as 47!
Off to the urologist I went the next day. The resulting biopsy found a good amount of cancer with a mix of Gleason 7 and 9. While the bone scan was clean, the CT found an enlarged regional lymph node that was needle biopsied and found to be positive for cancer. After getting advice here, my wife and I spent the next couple of months driving/flying around the country meeting with the most highly recommended doctors for PCa. In all, I spoke with or met with doctors in Ohio, Florida, Illinois, Michigan, West Virginia, and California. The range of differing opinions that I got for treatment of high risk PCa from the doctors was maddening and definitely was the worst part of the journey so far. All of my life if I had a medical problem the treatment was always clear. With PCa, it was an entirely different story. Never before had I faced something so serious, and never before was I so unsure of what path to take. Finally, despite differences from each doctor, a trend became clearer – whatever I did, it was going to be a multi-pronged approach and a mix of surgery, whole pelvis radiation, and ADT seemed to be what I was hearing was the best path in my specific case. Still, my head was spinning with the thought of whether the no surgery option (which was also supported) was better. However, with G9 a choice had to be made and I did what all of us here must eventually do and made what I believed was the best decision with the information that I had.
I found a surgeon who had done over 5,000 prostate removals, and with open surgery, he removed my prostate, seminal vesicles and some lymph nodes just before Christmas in December of 2016. Surgery was all that I expected based upon guys’ stories I found here. I have to say the advice I got here was priceless. Armed with my Home Depot bucket for my bag and, later my “piss cup” to avoid spraying the entire bathroom after cath removal, I got through it. I’m happy to say that I am continent and despite ADT, with a penile rehab plan I am now to the point where I am getting some life down there on its own. After some recovery, I sought out an experienced RO. In May, I started seven weeks of radiation treatments to my entire pelvic area including an extended area that covered higher up lymph nodes (thanks to advice from TA!). As with surgery, I have to thank God that my radiation SEs were basically nil. I had a couple of days of feeling a bit queasy in my stomach but never saw the bowel issues I was worried about, and the only effect on my urination is that I notice that I need to make sure that I “shake and dance” a bit more to keep the last drop from ending up in my pants.
Currently, my PSA has remained undetectable since five weeks after surgery. I am on Lupron since August 2016 and have had recommendations to stay on it for 18 months to three years. Based upon what I’ve read and advice here, I believe that I will do at least two years. My RO and Uro at the Cleveland Clinic tell me that other than continuing the ADT, I am done with treatment and should consider myself “cured” until/unless I have reason to believe that I am not. However, I have other doctors that I consulted with that have said that they believe that I should also consider a short course of chemotherapy and/or adding Zytiga to my Lupron for the rest of my ADT time. With a referral from my RO, I will be meeting with an MO who specializes in PCa at the Cleveland Clinic on August 4th . Obviously, I’d like to be done. However, with Gleason 9, as long as I have some medical professionals telling me that chemo and/or Zytiga may give me my best chance, I feel that I need to pursue it. Afterall, so far I’ve been really fortunate with SEs, and really, despite allot of worry, with my exercise regimen, ADT hasn’t greatly affected my ability to enjoy my personal life or effected my work life.
This whole thing has really sucked. No doubt and my life has changed completely in the past year. However, the experience has actually bettered my life in some ways. My relationship with my wife is stronger than I have ever known. Both my wife and I have high pressure, demanding careers. As we both have advanced “up the ladder” over the years, time at work became the focus and we had gotten to the point where we basically saw each other for only short periods during the day, and even then, we were so exhausted that we basically collapsed in our chairs and silently watched an hour of tv before going to bed. My diagnosis was the slap in the face that we both needed. We've made a pact that nothing will now come before she and I. We now come first despite our job and life demands. We don’t leave the house without giving each other an embrace and a kiss , we hold hands, we talk instead of watching tv, we work out together, we sleep spooned, tell each other we love each other several times a day, and we are leaving for an eleven night cruise later this week that we would never have done before because we couldn’t be away from the office for that long. Despite my diagnosis, I am now otherwise healthier than I have been in many, many years. I’m working with a dietician and exercise professional. I’m now a vegan (but with cold water, wild caught fish), I’ve lost a bunch of weight despite ADT. I feel better and look better physically despite the ADT. We’ve been out on our boat several times this summer. The past two years it sat at the dock unused because we couldn’t find the time. We are going to do a couple’s massage on the cruise that we’ve always wanted but never did because it wasn’t a “practical” use of our money. We bought the new BMW we’ve always wanted but never wanted to pay for. We’ve found time to see our relatives more. I now give my father a good hug and tell him that I love him when I see him rather than just shaking his hand. I’m optimistic and hopeful that I’ll die an old man of old age rather than PCa, but at the same time, I am making darn sure that I am taking every opportunity to live life and love those close to me as if it were my last day here.
Hang in there new guys. PCa is rotten, but the diagnosis does not need to immediately ruin your life.