Hi, My name is Fred Hill. My wife Lynn and I live in NYC. I am an avid cyclist and generally in very good shape. My story begins in 2007, when I had a prostate biopsy ---- which was negative, although there were some irregular cells. My PSA at the time was 6. The biopsy was a very harrowing experience for me. I was sore for weeks, ejaculations were painful and for 3 years thereafter, occasionally, small amounts of blood were in my semen. Also, I could not ride my bike for almost four months. I mention this because that experience made me hesitant to have another biopsy, even as my PSA continued to rise. I thought the rise in PSA was caused by my having had chronic prostatitis since age 30. In 2010, my PSA was 9 and my urologist suggested another biopsy. I refused, but did agree to an MRI. The MRI was negative---however, it noted a suspicious area on the left side. Again, I refused to have that area biopsied.
From 2010 until August 2012, my PSA fluctuated --- 10 was the highest, 8 was the lowest. At this time, there were a number of articles appearing in the New York Times, LA Times and other publications questioning the validity of the PSA, suggesting how it led to unnecessary biopsies, etc, etc. I also bought a book called Invasion of the Prostate Snatchers, co-authored by a physician and a cancer patient, who chose watchful waiting and then hormone treatment.
My mindset at this point was, --I don't have cancer --Biopsies will keep me from riding my bike and enjoying sex --my PSA is high for other reasons --Maybe I should stop having the PSA altogether.
Then, in August 2012, my PSA jumped to 13. A second MRI revealed what appeared to be a bulge in the suspicious area noted previously. I agreed to a biopsy of the suspicious area, 5 cores as opposed to 15. In September, I was diagnosed, four of the samples were positive, Gleason score of 8.
My urologist and family doctors were associated with a very fine institution in NYC, and there was a surgeon there who did robotic assisted surgery --- and he has a fine reputation. We were set to have surgery there on Halloween (October 31).
Just to get a second opinion, we decided to go to Sloan Kettering. That changed everything. At Sloan, for the first time, the medical professionals looked at the whole patient (history of PSA, MRIs, pathology slides, urinalysis and a comprehensive interview.) Based upon that, they determined there was a strong likelihood that the cancer had spread into the seminal vesicles. They reviewed the MRIs and concluded that there was a bulge outside of the prostate capsule.
As far as treatment choices were concerned, we discussed radiation with hormone treatment and surgery. I elected to go with surgery, hoping I could avoid radiation and hormones. On October 23rd, I had a robotic assisted prostatectomy. The surgeon removed the seminal vesicles and took more tissue than normal because of their concern regarding cancer beyond my prostate. He also removed 28 lymph nodes.
I went home the next day, with the catheter, my new master. No matter what I wanted to do, I had to ask it's permission. Want to walk, ask the catheter--want to have a bowl movement, ask the catheter, want to sit down, ask the catheter. Problem is sometimes it says "NO!" Although I was bloated and passed considerable gas, I was able to manage the pain with Vicodin for two days, then Advil.
I was recovering nicely and then Hurricane Sandy hit NYC. We live in an apartment on the sixth floor just north of the World Trade Center site. We were without power for five days. We have a Black Lab named Bella Bleu who needs walked. So I went up and down six flights of stairs at least four times per day. Although it made me tired and sore, I am convinced it helped me recover from surgery faster.
While the catheter was in, I did experience intense muscle spasms in my bladder. Also, my penis and scrotum swelled considerably. I mean we are talking about having a grapefruit between my legs. On November 1, the catheter was removed---. That is a day I will always remember, fondly. Once the catheter was removed, the swelling went down almost immediately. The spasms subsided considerably as well.
The surgeon reviewed the pathology report with us that same day. Indeed, the cancer had spread into my left seminal vesicle, although the margins were clear. One of the 28 lymph nodes was positive and the staging of my cancer was pT3b. He said our next key date was December 7, when he was looking for a non-detectable PSA.
I went home with pads and Viagra. I wore pads for 3 days, but the only leakage was when I sneezed once. For the first week, I got up at least 3 times per night to pee. Now, I get up about twice on average. On the ED side, I have managed to have one really "normal" orgasm (no urine thank god!) with my penis about 50% erect. That was by masturbating and taking a few tokes of marijuana. That is about the best it has been. It is amazing to me how much pressure there is in trying to get an erection. The weed did help relax me. I am taking 25mg of Viagra daily and 100mg once per week. I have an appointment at Sloan on Friday with a Doctor who specializes in ED. I am assuming I am going to do injections, at least for a period of time.
I had my PSA taken on Friday--0.08. I thought that was good, until I spoke with my surgeon's office. They were looking for 0.00. Because of the involvement of one lymph node, they want me to consider a short treatment of radiation and hormones. I have a appointment with an oncologist next week and my followup with the surgeon has been moved up to early January instead of later in the month.
More to come and I am sooooooo glad I found this site!
It has been sometime since I updated my story. So here goes. First the personal, I am divorced and now live part time in Scottsdale, AZ and in Long Island during the summer. I am still very active physically, cycling and doing weights in the gym. I have a woman and a very fun, active, life, which includes very very satisfying sex. I have never had a problem with incontinence.
After my surgery in 2012, my PSA; was .08 and it continued to climb. 2013 was a very tough year. I officially separated from my wife in January, lost my dog Bella Bleu in April, my dad died in September, I experienced food poisoning in September while undergoing radiation and in a weakened and depressed state, ended up agreeing to a very one-sided separation agreement with my wife. But I digress.
Despite my rising PSA, all of my body and bone scans were negative. Nevertheless, in June, 2013, I began Hormone therapy, followed by 8 weeks of radiation which started in late September and continued through November. During that time, I was also on a drug called Xandi, which my oncologist theorized would be beneficial. It is used primarily for metastatic prostate cancer. But he thought it would be useful in my situation. The side effects from the Hormone therapy were really really tough. Hot flashes, depression, no libido and almost an aversion to any type of intimacy. The really good news is that my son, relocated, quit his job and moved in with me, staying with me through the entire treatment with radiation. And, I got a new puppy, compliments of my daughter who talked me into getting a new pup and helped me pick her. She is a Yellow Lab named Amazing Grace. Just having to get up in the morning and walk her and responding to her never ending desire to play helped me immeasurably after the treatment, my PSA; was undetectable from December 2013 through April 2015. Then it slowly began to rise. When it reached 2.4 in November, I had some scans, which revealed a met on my lower right pelvis. I started hormonal therapy again and will have the spot radiated starting next week---high dose, four or five treatments.
Here are some observations: First, if I had it to do over again, I would do radiation and hormone INSTEAD of surgery. While the surgery itself was almost a non event, I developed Perone's disease, which are you probably know is a deformity of the penis caused by trauma. I believe the catheter following surgery caused the trauma. Also, there is just something unsettling about altering the plumbing down there, even facing a Gleason 8. Second, because of the Perone's disease, I opted for a penile implant in 2014 and IT WORKS GREAT!! For me, it is much much better than the injections. I did lose some girth and length, but my penis is straight, "handsome" (that is another story), my sex life is very very satisfying and a blessing. Third, I am aware that I will have to continue to fight this for the rest of my life, or until they invent a cure. However, I am fully vested and believe in the body's power to heal itself. To that end, I am doing some homeopathic treatments (I do an inter-venous drip of Cucumin weekly and Typus vaccinations yearly). I also eat much more cleanly than before---almost no red meat, lots of veggies, chicken, fish and turkey on occasion. Very very little alcohol and when I do only wine. And I am staying active physically, primarily cycling and weights, and taking care of my spirit with meditation and prayer. I promise to send another update in six moths or so. God bless you all.
Fred's e-mail address is: firstname.lastname@example.org