It has been just about 3 years since I was diagnosed with prostate cancer. A lot has happened since that time and I thought it may be helpful to share the main points of what has happen during that time so that others may benefit from my experiences. I am willing to share e-mails with people who may need more information or needs me to clarify or expand upon something I have written here. I'm here to help in any way that I can. If you have PCa (prostate cancer), your life will never be the same and you'll need all the help you can get. It is a whole new world out there for you now and you'll have lots of decisions to make and many experiences that you've never had before. Some good, some not so good.

My name is Harry. Three years ago, I was 67, happily married for 45 years, and we were empty nesters. I was retired and my wife, Mary, was approaching retirement. We were living and had lived in several towns in close proximity to Boston.

My PCa journey started in August, 2017, when my new to me PCP, Dr. S, ordered my first PSA blood test. I had always blindly trusted my doctors to take care of me, but for some reason I had never had a PSA blood test. Back then, as it is now, there was a great debate about the need for PSA screening, so I guess my previous doctors believed that PSA screening had too many questions and problems, so I never had one. My new PCP obviously saw the benefit of PSA screening and I had one. And my PSA level was elevated. In retrospect, I wish I had had a PSA screening earlier just so I had a baseline reading.

My PCP referred me to a urologist, Dr. Z, because of my elevated PSA. My urologist examined me and thought that possibly I had a UTI that was causing my PSA to be elevated. He gave me an antibiotic to take for several days. After that he wanted me to wait a week and have another PSA screening and to set up another appointment to review the latest PSA results. I did that and the new results still showed an elevated PSA. Dr. Z indicated that the next step was to have a prostate biopsy. He explained the procedure, gave me some literature on the procedure and asked me to review everything and to let him know if I had any questions and / or if I wanted to schedule the biopsy.

For background information, at that time I was a very shy and a very sexually modest person. Dr. Z was the first urologist I had ever seen. I had had only a couple of DRE's in my life and they were embarrassing and somewhat emotionally traumatic for me. Same goes for the dreaded hernia checks. It was so humiliating to be exposed and have one's genitals touched and manipulated. I had led a very sheltered life where it was unacceptable to be seen in one's underwear, let alone be seen naked. I had never been in a common shower area or gone skinny dipping or anything like that. Once I reached somewhere around age 5 or 6, no one saw me naked other than about 3 doctors and my wife. I know that my circumstances were very unusual but that's the way it was and I was very comfortable with that.

My wife, Mary, and I reviewed everything we could find regarding a prostate biopsy. Lots of stuff on the internet. And lots of horror stories. I was totally petrified of the prospect of having it done. I knew there would be three medical people involved with the biopsy; my urologist, his female, very young and attractive nurse assistant and the technician performing the actual core sampling. The prospect of being naked from the waist down with 3 people seeing me naked AND in addition manipulating the biopsy probe through my rectum was such an intimidating thought. So much could go wrong with the biopsy. And the biopsy itself is so painful. That's according to the internet. But cancer is no fun, so I overcame my very real fears and I scheduled the biopsy.

At the biopsy, there were the three people there, as I expected. However, I was draped and over draped for the procedure and I was positioned on my side with my knees bent. I never saw what was happening but they always explained what was going to happen before they did each step. My bum checks weren't really exposed nor was anything else. They made a slight slit in order to get to my rectum. They extracted 12 cores from my prostate very quickly. Saying "that's the first…. that's the second…." etc. They did say that there would be some pressure during the procedure but to let them know if there was any pain. There wasn't any. For me the prostate biopsy procedure was really a "non event". All that worrying was for nothing. Whole thing from getting on the table to getting off the table took only about 10 minutes.

Now I had to wait for the results of the biopsy. Talk about worrying. I was a basket case. I met with my urologist, Dr. Z, and he explained that of the 12 cores sampled, 3 were cancerous with Gleason Scores of 6, 6 & 7 (3 + 4). He said I was stage T1C. Not good news, but it could have been far worse. But he did recommend surgical removal of my prostate. Not what I wanted to hear. I wanted to hear "watchful waiting". We discussed that option, but he wouldn't go for it. But he did say it was my choice on how to proceed.

Mary and I researched everything we could, with the internet being our prime resource. Once we became better educated, we asked Dr. Z for referrals to other doctors so we could discuss my options. Dr. Z is not a surgeon, but he has many contacts with surgeons and radiation oncologists. Boston is known for its great hospitals and doctors and there are many to choose from. After additional research and consultation with Dr. Z, he referred me to Dr. M, a surgeon, and Dr. H, a radiation oncologist, for further consultation. They are both with one of the world's leading hospitals and both have lots of experience. Mary and I met with each doctor separately.

Dr. M is head of surgery. We meet with him and his assistant. When I meet someone, especially for the first time, I like to shake hands as we greet each other. Kind of sets the tone. Now this was 2017 before the pandemic. Dr. M would not shake my hand. Explained that he didn't know me and that nothing good could come from shaking hands. Really! We briefly exchanged verbal pleasantries then got down to business. He said he had reviewed my records and that I had prostate cancer. Therefore, he recommended surgery to remove my prostate. Said he's done it thousands of times. No big deal. I asked him about nerve sparing removal of my prostate as I wanted to maintain as much sexual function as I could. He said that he doesn't worry about the nerves, that there is too much hoopla about nerve sparing surgery and that it is all a bunch of bunk. He said his job is to remove all the cancer with good margins and any thought of "nerve sparing" surgery was very chancy and something he didn't believe in at all. Dr. Z highly recommend Dr. M, but I didn't care for his bedside manner at all. I think that one has to have full confidence and be very comfortable with their doctor, especially if that doctor is a surgeon. At that time, I was not leaning toward surgery or Dr. M. I still had at least one other doctor to consult with before I made any decision.

We met with radiation oncologist Dr. H where we discussed brachytherapy. My research show that brachytherapy, the insertion of several radiation pellets into the prostate was a tried and true treatment for my type of prostate cancer. We discussed this option with Dr. H who was very approachable, knowledgeable and experienced with this procedure. He examined me and performed a DRE. He indicated that my prostate might be too big for brachytherapy. But the only way to know for sure was to do some MRI scans. That was scheduled and performed. Later when we met to discuss the imaging, he indicated that the imaging show that my prostate's size was just over the threshold recommended for a successful brachytherapy procedure. I was very disappointed but he took the time to review the images with me, do another DRE and do a lot of hand-holding as he brought me down from my disappointment. I really appreciated that. We then discussed radiation and the strong likelihood that with radiation I would not need chemotherapy. He gave me some literature to review and asked us to do some further research, think about it and to get back with him to discuss this option further.

Mary had had breast cancer with surgery, reconstruction and chemotherapy several years ago. Not a fun time for any of us. I didn't want prostate surgery or chemo or any drugs, so what Dr. H said about radiation with no chemo or drugs was appealing to me. We thoroughly researched this option and decided that maybe this was the way to go. We met again with Dr. H to discuss some more of the details. He indicated that I would have to have eight or nine weeks of M-F daily radiation in Boston. That was hard to swallow as going to Boston, only about 30 miles away, was anywhere from a one hour to two hour difficult commute one way. Plus, I may not be able to drive myself because of side effects of the radiation. We asked if he could refer us to another hospital / radiation oncologist that was closer to me and easier to get to. Fortunately, he had an associate whom he had gone to medical school with that was based at a satellite facility of a major Boston hospital and for whom he had the highest regard. Finally, I was getting lucky. He referred me to Dr. J.

Dr. J, a radiation oncologist had the same bedside manner as Dr. H which was a real blessing. We met with Dr. J one day for about 3 hours. She was so sweet and knowledgeable. She indicated that she had reviewed all my records and that she thought I was a perfect candidate for a new, to the USA, radiation technique. Europe and Canada had been using the technique for a while with great success. Radiation oncologist in the US where aware of that success and some were trying it. Dr. J said that in a year or two this new technique would become the new standard in the US. Without getting all technical, for me the main difference in the new technique was that I would only need 4 weeks of radiation rather than 8 or 9 weeks. Also, there were no drugs or chemo anticipated with this treatment. Bingo!

At that time, and I think it is still the case, the success rate of surgery versus radiation for PCa like mine were identical. The down side effects of surgery were mostly immediate. Things like loss of ejaculation, incontinence, loss of arousal and things like that. With radiation, there is no immediate loss of any of those things; there is likely to be some losses over time, as much as two or three years down the road, but nothing sudden. The main immediate side effect of radiation is a gradual building feeling of getting run down. That typically starts a week or two after the start of radiation and continues to build for a couple of weeks / months after the conclusion of radiation. So, the choice was simple for me. I chose the four week radiation option.

EBRT radiation therapy starts with a one time "simulation" session. Using an MRI machine, the technicians map your prostate area and actually mark three points on your mid section with permanent tattoo ink. Three little dots; one about two inches above the penis and one on each hip. These dots are used to line up the radiation machine for each radiation session. The radiation machine projects a laser line onto your mid-section and the line needs to line up with the three dots. Makes perfect sense to me, but I was not prepared for the ink dots, the nudity and the pretty female technicians. As I mentioned previously, I had led a very shelter life regarding modesty and genital exposure. I was thoroughly embarrassed when exposed although the female technicians were very professional and didn't gawk or say anything about my penis.

After my radiation team reviewed all the simulation data and my previous prostate data, they did their calculations and programmed the EBRT computer specifically for my treatment. Once they completed their work, they called me and we set up a 4 week radiation schedule. They said that each week I would meet with the doctor once and the nurse one additional time at a minimum. They also indicated that I could meet with either or both any other time if I wanted too. Sounded like a good plan to me.

Before each radiation treatment, I had to fill my bladder with a minimum for 40 ounces of water so that most of my bladder was as far away from my prostate as possible. It was a real effort and pretty uncomfortable to drink that much water before each radiation session. But it was for my own good, so I did it.

For my first radiation session, I checked in at the office and they said they would call me when they were ready. Later a technician came out and called my name. She introduced herself and explained the process. She had me remove my shoes and asked me to step up so I could lay on the EBRT pad for radiation. I had on my regular street clothes at this point, minus my shoes. At this time, I noticed that two other female technicians had entered the room. They smiled and introduced themselves. Next, she asked me to drop my pants and underwear to my ankles and to lay on my back on the EBRT pad. Next, she placed a very small towel over my penis. They needed me pretty much exposed this way so that EBRT machine's projected laser line lined up with the three tattoos they had put on me during the simulation session. They adjusted the location of the pad that I was laying on by mechanically moving it so that the projected line lined up with the tattoos. Very necessary but also very embarrassing to have my penis fully exposed before the small towel was placed over it. And totally unexpected. All the technicians were very professional. Next, they strapped be on the pad to minimize my movement and also so that I couldn't fall off the narrow pad. All the while, they didn't gawk, smirk or say anything about my penis. At least that I could see or hear. Next, they left the room, then one of them spoke over the speaker. She said the radiation treatment would start soon and that I should stay as still as possible. For the next several minutes the EBRT machine did its thing. It rotated around me and I could see a laser light where the radiation was being administered. It was a bit noisy, but not unpleasant or irritating to my ears. Then it stopped and the technicians entered the room. One said one down and 19 to go. They removed the strappings holding me on the pad. Two of them helped me up from the pad as I'm an old man who needs help getting up. Of course, the small towel covering my penis fell off me as I was getting up and went onto the floor. One of the techs picked it up and nicely said next time to either hold the towel or to place it on the pad as I was getting up. Then I was told that I could pull up my underwear and pants, put my shoes on and that I was done. I did as I was told and thanked them. As I left, we simultaneously said "see you tomorrow".

I acted as normal as I could while being exposed during that first treatment. I hadn't anticipated that I would be exposed that way, especially with three very attractive and young females around. I was thoroughly embarrassed while exposed. And the thought that likely the same thing would happen 19 more times was quite sobering. But it was not like I had any choice in the matter. But now that I knew what the process was, I couldn't help but think about what happened and what was going to happen. Worrying and thinking about my embarrassment was all that was going through my mind. What would happen if the next time I was to get an erection or maybe just semi hard? I can't control that. Surely, they will notice. Should that happen should I apologize or say anything about my erection? Will they comment and say something like don't worry as that happens and it is quite normal?

I think my penis overall is quite average size wise. It is circumcised but very small when flaccid, about an inch or two. That makes it all the more embarrassing for me when I am seen naked. When I'm erect it is about 5 or 6 inches, which I think is quite normal. But when exposed I'm usually quite flaccid and I'm wondering what they are thinking; poor guy he's not well endowed... poor wife, she got short changed… or something similar. They don't know that I'm quite the grower when fully erect. Of course, medical people that have seen me naked have always been quite professional and have never said anything. I know how they act but I don't know what they are thinking and that is very concerning and embarrassing for me.

On subsequent radiation sessions, the process was very similar to the first one. Shoes off, approach the table pad, pants and underwear down to my ankles, get on the pad with some assistance from a med tech or two, have one of them place a small towel over my genitals, get strapped in, line my three tattoos with the laser line from the EBRT machine, stay still for about 3 to 5 minutes as I had my EBRT session, have the med techs reenter the room to unstrap me and help me off the pad, pull my underwear and pants up, return to the chair to put my shoes on, thank them and say see you tomorrow. The med techs had a rotation of about 8 different technicians with me seeing anywhere from 3 to five of them at each session. We were always cordial but I really did get to know any of them. At several sessions I was in various stages of having an erection which they obviously saw as I dropped my underwear or got on the pad or had the towel placed over my genitals or as I was assisted getting off the pad or as I was holding or removing the towel or as I was pulling up my underwear. Very embarrassing to have my penis exposed to them but even more so when I had an erection. They were always very professional about my exposure and state of erection.

I should note that on several occasions, even though I drank all my 40 ounces of water right before each EBRT session, the lead med tech had to tell me that the EBRT machine detected that my bladder was not full enough. That meant that the treatment could not continue until I drank more water. So, I had to leave the radiation room, drink lots of water, and go through the whole process again. Not a fun thing.

Turns out that during the treatments, I saw a nurse one day a week and also separately saw Dr. J one day a week. At that time, we reviewed what had happened, how I was feeling and what I was to expect, in addition to answering any questions I had. As time progressed, I experienced more and tiredness and lethargy, which they said was normal and expected in addition to a sun burn like discoloration in my pelvic area. My thought was that maybe it was a radiation burn, as it happens sometimes with EBRT. It did get redder as time progressed but neither the doctor nor the nurse, I was seeing thought that it was a radiation burn. Each examined it each time I saw them, meaning I had to take off my pants and underwear, not just drop them to my ankles, for a detailed examination. They thought it was some type of a rash. They did give me a cream to put on it daily. My PCP and my dermatologist thought it was a radiation burn. Whatever, it didn't get that bad and it eventually went away after about 6 months.

Once the 20 radiation sessions were completed, I was so relieved to not have to have my genitals exposed to those attractive female med techs. I still felt very tired and very lethargic, more so each day. But that was expected as the radiation was still having an effect on me and would so for several weeks.

Months before my PCa experience, Mary and I had booked a vacation week in Punta Cana, DR. We talked to my radiation oncologist, Dr. J, before radiation treatments started about whether or not we should cancel our vacation plans. Since our vacation wasn't going to start until 3 weeks after radiation was to be completed, she said that the timing was perfect as I would still need to take it easy at that time and what better place is there to take it easy than in the DR. That was what kept me going during some difficult times during radiation treatments; R & R in Punta Cana. We had a wonderful vacation there at an all inclusive.

About 3 months after radiation was complete and every six months thereafter, I had an appointment with my radiation oncologist, Dr. J. She wanted to track how I was doing and also answer any questions I may have had. Other than my radiation burn / pelvic rash, everything was going as expected. She had me remove my pants and underwear in order to exam the discoloration there. As time progressed the discoloration had improved and I was getting stronger and having more energy each day.

I continued to see my PCP on a regular basis to address my other medical concerns. I also saw my new urologist, Dr A, who replaced Dr. Z since traveling to see Dr. Z was too time consuming because Mary and I had relocated to a different area. There weren't a whole lot of urologist to choose from in my new area, but Dr. A had great credentials and accepted my insurance so I chose her. Yes, a female urologist. I guess I had gotten somewhat immune to having my genitals exposed and examined after all that occurred with all those female med techs during radiation, my female nurse examinations and my female radiation oncologist doctor, so I chose her.

Dr. A is VERY thorough and has a great bedside manner. She gives me an exam every six months when I have a new PSA blood draw. She also is monitoring and trying to solve my penial problems which consist of ED, pain urinating, blood in urine, urine leakage and a weak urine stream. She says that my radiation may or may not have caused any or all of these problems, but it certainly didn't help any of those situations. She does a DRE each time and says that my prostate has certainly shrunk and feels like she expects it to feel. Some of my other problems could be as a result of a UTI, so she put me on antibiotics. But the symptoms continued. Next, she wanted to check my bladder. That is accomplished via a cystoscopy. It is like a colonoscopy except a tube with a camera and a snipping device is inserted through the penis and is pushed up to the bladder where she did a biopsy. The biopsy came back negative but she did find that I had a "stricture" in my penis that was likely caused by the radiation and that could be the cause of some of my symptoms. A "stricture" is an abnormal hook or bend in the urethral canal running through the penis, the prostate and into the bladder. She dilated it during the cystoscopy without a problem and said that it may alleviate some of my problems.

Dr. A and I talked about my ED problems. I had them to some degree before my PCa and radiation, but things were getting worse. Years ago, my PCP gave me some sample Viagra, 100 mg, and said to cut them into quarters and see how 25 mg worked for me. Worked great for a time, then went to 50 mg for a period, then 75 mg and finally 100 mg. That was over about a decade or more that I got good results. She suggested I try Cialis. I did but I didn't get the desired results. Radiation cause a shortening of my penis which was somewhat expected but it was very discouraging, as I was already small when I was flaccid. It had also severely lessened by ability to ejaculate, also expected, but none the less disappointing. Most of the time there was no ejaculate when I masturbated or had intercourse. Sometimes I did have a dry orgasm but most of the time I didn't get much if any relief. Also, my erections were barely good enough for penetration and sometimes I couldn't get hard enough to make penetration. None of this makes for a good sex life. Either for me or for Mary. Mary was really good about it, but I knew she needed more and this made me feel even worse.

I talked to Dr. A about this problem and she had a couple of suggestions. One was to give myself penile injections. Really! I had never heard of such a thing and I am and have always been fearful of injections. And to inject myself in my penis was just not going to happen, I thought. But the sex drive is very strong. I wanted to be hard enough to please Mary and myself. I owed it to Mary and myself to at least give it a try. I discussed it with Mary and she was all for it. So, Dr. A gave me a prescription for Trimix injections and showed me how to use it the first time. Yes, she instructed me on how to give myself an injection in my penis, observed as I did it and then watched as it became erect. Never in a million years did I envision that scenario. But as I mention, the sex drive is very strong and it helped my overcome my fears. I've been giving myself Trimix ejections for several years now and I must say that it works well for us. I have orgasms, some dry, some with a little ejaculate and sometimes if I'm really lucky, I'll leave a wet spot on the sheet. That brings back memories of the old days when there was always a wet spot on the sheet and one or both of us complained about it. Funny how things change. Thank goodness for Trimix and for Dr. A!

I've had two surgeries since my radiation. None were related to my PCa, but they were necessary. I had a hernia repair and my gall bladder removed. I'm not getting any younger and my recoveries took their time and also took their toll on my body. So, I'm not sure if any of the maladies I'm experiencing now are a direct result of my PCa radiation, my other surgeries or just because I'm getting older. Likely a combination of the three. I wish I knew, but it is what it is. I had my last surgery in late January of this year and here it is late September and I'm feeling pretty good, all things considered. I have my regular chores that I perform around the house and in the yard and the difference between doing them in May versus now is incredible. Each month it gets easier and easier. I hope this progress continues.

My PSA levels have gone down with each sampling. My doctor says I may not have reached my nadir yet, even after 2.5 years. It is a bit higher than she expected it to be at this time but it is still slowly going down and she's happy that it is below 1.0. Last reading it was 0.5, I'm happy if she's happy.

So, I'll be 71 next month. If all this started when I was 71 then I don't think they would have done anything. I don't think they check for PCa once you reach 70. I wonder what would have happened if we had done "watchful waiting" or if I didn't have the first PSA test 3 years ago. Maybe I had the most common type of PCa, the type that is slow growing. Ignorance is bliss. I'd rather that I didn't go through everything that I've gone through with my PCa these last three years. All that worrying, the stress the anxiety, them humiliating embarrassment. But I made my choices along the way and I'll live with it. I'll never know if they were the right choices. Some days I feel like they were the right choices. Other days I regret some of the choices I made. Life goes on.

Hope my story helps someone. Don't hesitate to contact me if you have any questions or if you just want pursue things further. You Are Not Alone.

Thanks for reading my story and good luck with your journey.

Harry

It has been about 2 years since I first wrote here and about 5 years since I was diagnosed with PCa.

All and all, I'm doing pretty well. My PSA has been very close to 0.50 for a while now. My Urologist is happy with that, so if she's happy, I'm happy. I have pretty much overcome my fear of having my genitals exposed and examined, even by a female doctor. I've had several cystoscopies and two hernia repairs. So there's lots of exposure. Not as embarrassing as in the past but still somewhat embarrassing. It is what it is.

My ED is getting worse. I still perform my trimix injections in my penis beforeI have sex with my wife. It still works well, but without the trimix injection, I don't get hard at all. Makes masturbation very difficult.

My ejeculations vary from none at all, to very little, to a bit more than a small amount. Gone are the good old days of big wet spots.

My wife Mary still gets satisfied sexually when I use my trimix injections, but misses my morning wood!

That's it for now.

Harry

I had radiation to treat my condition about 6 years ago. My radiation oncologist doctor saw me twice a year for 5 years and now says I'm cured and that I don't need to see her again. My urologist has also monitored my situation. I had psa's taken every 6 months and after my last one she said I can go to have my psa taken once a year. My penis has shrunk in size and that was unexpected and is somewhat embarrassing when I have my penis examined. My penis was less than average size before and now it is much smaller than average. My PSA was elevated and I chose radiation over surgery. I often question if I should have had a period of watchful waiting instead of having radiation right away.

Harry's e-mail address is: guy52married AT yahoo.com (replace "AT" with "@")