Steve A. talked with Prostatepedia about his experience with erectile dysfunction (ED) after surgery and radiation for his Gleason 9 prostate cancer.
What was your life like before you had prostate cancer?
Steve A: A hell of a lot better than it is now. I think about and read about prostate cancer daily. I have no symptoms. Never have had any. But I work hard to combat the side effects of treatment and forestall recurrence. Eat right, exercise daily, and try to help others with prostate cancer.
I’m retired. I was a senior executive at a Fortune 10 company. I retired early back in 1998 and moved part-time to a resort community. I played a lot of golf and worked in community projects, including community government, and started a real estate development business.
I moved here full-time in 2001 and noticed that I had a problem with urination frequency. I saw a urologist who determined that I had benign prostatic hyperplasia (BPH) and put me on Avodart (dutasteride).
Then my prescription drug plan dropped Avodart (dutasteride), so I switched to Proscar (finasteride). Later my urologist added Flomax (tamsulosin) to shrink my prostate. I was on Proscar (finasteride) and Flomax (tamsulosin) continuously until 2013. They controlled my BPH pretty well but impacted my sexual performance. My sex life was not as good as it was before that as a result. I had mild ED.
Did you go on any medication for the ED at that point—like Viagra (sildenafil) or Cialis (tadalafil)?
Steve A: I tried them. They worked.
When and how did you find out you had prostate cancer?
Steve A: I had been getting annual PSA tests since age 40 as part of annual company physical exams. The PSA was around 0.4 for years, then increased gradually as I aged. But it was never considered a problem since it was well below the magic 4.0 considered “normal.”
Then, in 2013, my PSA suddenly doubled to 5.4 from 2.7 in 2012. I had it checked again and this time it went up to 6.6 in only a few months. So my GP, who recognized that PSA velocity (doubling time) was an indicator of a potential problem, recommended a biopsy. I found out that finasteride cuts PSA roughly in half, so my PSA was actually 13.2. This shocked me. Should I have had a biopsy years earlier? Could I have cured my cancer if I’d found it earlier?
So you had a biopsy?
Steve A: I got a biopsy from my local urologist. The Proscar (finasteride) had reduced my prostate size quite a bit, so I only needed to have six cores taken. It was painless. Pathology found 40% prostate cancer in one core and 10% in another core. The others were clean. My Gleason score was 4+4=8. I had a second opinion done by prostate cancer doctor Jonathan Epstein at Johns Hopkins; he upgraded my Gleason score to 4+5=9.
My urologist talked about what I should do. Was I a candidate for active surveillance? He didn’t think so. Turns out that was a huge understatement!
He said I was a candidate for either radiation or surgery due to my age (69 then) and otherwise good health.
So I saw a couple of radiation oncologists and a couple of surgeons. In addition to seeking a cure, I was concerned about three things: ED, hormone therapy, and dragging out the treatment process. I’m the kind of person who likes to get stuff done my part. I now question my decision to have surgery since the cancer had already escaped the prostate. Should the urologists or I have known that?
When you met with these different surgeons and radiation oncologists, did any of them speak to you about ED after treatment?
Steve A: I asked both surgeons if they could do nerve-sparing surgery because I was concerned about my sex life after treatment. The local surgeon said, “No, I wouldn’t try it. With Gleason 9, I’ve got to go pretty wide on the margins to ensure I get it all. I can’t promise that at all.” He was totally unconcerned about ED. I didn’t like his bedside manner!
When I spoke to Dr. Epstein he said he would do nerve-sparing surgery and gave me printed handouts which addressed all facets of what I could expect post-op, including incontinence, ED, etc. I liked his can-do attitude and was impressed with his credentials and Johns Hopkins’s reputation in the field of urology.
What about the radiation oncologists?
Steve A: I don’t remember them saying anything about ED. But they both agreed that hormonal therapy would be necessary before and after radiation therapy. That turned me off completely. I had read about the side effects of hormonal therapy and wanted no part of it. However, in addition to talking to people, I do a lot of reading. I read that you’re going to have ED with surgery, but that it’ll go away after a year or maybe two. ED with radiation comes later on.
I decided I’d rather have ED up front and get it over with than have it come two or three years later. So I went with surgery.
What happened after the surgery?
Steve A: The day before surgery, the doctor changed his mind and suggested that I have open surgery rather than robotic. He wanted to be able to feel the tumor, margins, and lymph nodes to determine which to resect. I was a bit concerned about recovery from open surgery, but he convinced me it would be no worse than robotic.
He resected about 10 lymph nodes and found nothing there. Pathology ended up very poor: positive margin at the base, seminal vesicle invasion, and extracapsular extension. It was serious because it had already escaped the prostate. I was downgraded from stage pT1c to stage pT3b.
When the surgeon came in to talk to me about my prognosis, he was not happy and said, “You’re going to be fighting this for the rest of your life.” Turns out I was one of the 10% with a high-risk case. I asked him how long I had to live. He said I’d still be alive in 10 years and sent me a nomogram that scored each of my risk factors in terms of life expectancy. I hope he was right!
So obviously, I had ED after surgery. I had incontinence for a while too, but it was mild. I wore one pad a day for 13 weeks, but haven’t had much of a problem since. I had no complications from surgery. My wife and I flew to Baltimore. She stayed in my recovery room. We flew back home three days later. The catheter and stitches were removed by my local urologist 10 days later. I was playing golf three weeks after the surgery. I’ve been unable to have any sex ever since. But subsequent radiation treatments are probably the main cause of my ED now. I’ve been fried.
Were you able to talk to your doctor about it?
Steve A: Yes. He said you have to use it or lose it. Then I had recurrence (rising PSA) so I no longer conferred with my surgeon. Only six months after surgery, my PSA started going back up again. I needed hormone therapy and radiation after all! In mid- 2014, I had 38 fractions of salvage radiation therapy (SRT). I was also on Lupron (leuprolide) for six months. That completely destroys your libido anyway. I didn’t even have any desire for sex.
Were you more worried about the recurrence than any ED?
Steve A: Absolutely. When you have Gleason 9 with my poor post-op pathology, survival—not sex—is all that matters.
I’ve had recurrence twice since SRT: in two pelvic lymph nodes in 2015 and in my right femur in 2017. In 2015, I went down to Florida to have 50 fractions of intensity-modulated radiation therapy (IMRT) to all my pelvic lymph nodes and was on Lupron (leuprolide), Casodex (bicalutamide), and Avodart (dutasteride) for 13 months. Just a month ago, after stopping hormonal therapy, they found a lesion on my upper right femur. I’m now back on hormonal therapy and had stereotactic body radiation therapy (SBRT) in three fractions locally to my femur. I’m also on Xgeva (denosumab) for bone mets.
So far, no cancer has been found in my prostate bed, lymph nodes, or other soft tissue or organs. In that sense, I guess I’m lucky.
I’ve completely forgotten about the whole issue of sex. At night, when you dream, you sometimes think about it and really miss it, but the reality is that my primary goal is to be healthy, happy, and live as long as I can. I don’t need sex for that.
Did you ever seek treatment?
Steve A: I talked to my urologist. After surgery, I used the pump.
Did it work?
Steve A: It was marginally successful. I just wasn’t too keen on it. I thought it was more of a pain than anything else. I didn’t try injections. I tried daily Cialis (tadalafil). That didn’t do anything. The urologist talked to me about having an implant.
I haven’t really given that any thought. Now that I’m back on Lupron (leuprolide), I don’t have the desire for anybody. I’m just totally oriented to quality of life and length of life at this point. Quality of life doesn’t necessarily mean sex anymore.