Part 9 - My personal experiences with Prostate Cancer

I wasn’t planning of posting to this blog while on a month long vacation, but since I’m laying low for a while recovering from an indirect problem related to prostate cancer, I will post some relevant information. 

One of the possible side effects of prostate surgery and/or radiation is a stricture.

A urethral stricture is a narrowing of a section of the urethra. It causes a blocked or reduced flow of urine which can lead to complications. There are various treatment options which aim to widen the narrowed section of the urethra.

I have had urinary issues since I received cancer treatments. In short, I pee a lot. This seemed to be getting worse in the month before we left on our vacation. My surgeon scheduled a cystoscopy about two weeks before our departure date (in hindsight, not a very good move on my part). 

A cystoscope is a thin tube with a camera and light on the end. During a cystoscopy, this tube is inserted through your urethra and into your bladder so the doctor can visualize the inside of your bladder. Your urethra is the tube that carries urine out of your bladder

The procedure is not extremely painful (they use an anesthetic) but still rather uncomfortable. It only takes about 5 minutes, but those are a long 5 minutes!

When the procedure was done, I looked at the cystoscope. It didn’t look very thin to me. It was also freaky because there was a good bit of blood.

I went home and realized that I couldn’t pee (the procedure had caused some swelling in my urethra). I gave it a couple of hours (probably not a good move). My wife took me to the emergency room, and the plan was to insert a catheter. Like any emergency room, there was a wait. After a while my bladder got very uncomfortable. .

Finally a nurse arrived and attempted to insert a normal catheter (not a pleasant experience), but it was blocked by the swelling. She tried a smaller catheter and that didn’t work as well. She had to page a doctor from the urology department and he was able to get it in (immediate relief).

I had to wear the catheter for 5 days; it was during that time that my back started to ache. I mentioned that to the nurse who removed the catheter, but he suggested some Tylenol.

I was nervous to fly to Myrtle Beach so soon after the procedure, but we made it just fine. We went on about the business of having fun. I had to pee a lot (nothing unusual about that given my history) and occasionally there was a little blood and a burning sensation (not unusual for a few days after a cystoscopy/catherization). But these symptoms persisted, along with the pain in my back.

Finally my wife took me to a walk in clinic, and a urine test showed that I had a urinary tract infection, which sometimes happens after a cystoscopy. I’m on a strong antibiotic and should be fine after another day or two.

I will think strongly about scheduling a procedure so close to a vacation in the future.

Life (so far) after initial treatments:

Over the past 5+ years, I have felt good and have been able to lead a normal life. I take good care of myself – I try to eat right, get a lot of exercise, get plenty of rest, and try my best to just enjoy life. I’ve been blessed in life – an awesome wife, a wonderful family, great friends, and a wide variety of interests.

I know this may sound weird, but in some ways prostate cancer has improved my attitude about life. I used to get stressed out by work and other pain in the butt things that happen in everyone’s life. Now I seem to be a little calmer (my family may disagree there), and I more clearly see what is truly important in life.

Knowing that I have cancer goes away from time to time, but it always comes back, tapping me on the shoulder, whispering in my ear. But I think this has made me more focused. I know more than ever that life is precious. Sunrises are more beautiful. Roses smell sweeter.

I hope that this experience has made me a better person. That will be for others to decide. But I have plans to accomplish many more things – no more wasting time!

As I mentioned earlier, My PSA rose dramatically during my latest test.  I officially have advanced prostate cancer. It had metastasized to my lower spine, but it wasn’t a lot of cancer. I'm in no pain. My surgeon decided to put me on hormones. This is not a cure, but a treatment that will prevent the spread of prostate cancer for now. My PSA will go down. When it goes back up (hopefully 15 years from now), the hormones will have stopped working.  I know that there are various chemo drugs that could be the next step. But I’m hoping that by then ongoing research will have found something that will make prostate cancer like diabetes – a chronic condition that you just live with. And if I run out of traditional options,  I will volunteer for every trial that I qualify for.

As the late, great Jimmy V said: "Don't give up, don't ever give up".

I have an appointment with an oncologist (scary word) in March. As I learn more things from him (as well as other sources), I will post here again from time to time. But before that, we’re going to Myrtle Beach for a month. I’m hoping my prostate cancer will stay hidden in my suitcase the whole time.      

Part 8 -My personal experiences with Prostate Cancer

Speaking of long term side effects from prostate surgery (and radiation), the two most common are erectile dysfunction and incontinence.

As far as erectile dysfunction, you need an honest discussion with your surgeon (and partner) prior to surgery. There are “nerve sparing” techniques they can use to prevent this issue (ya’d think that would be common practice, no?). Very often erectile dysfunction improves after some long term healing. If it persists, there are medications and other techniques that can return some functionality.

More info:

http://www.harvardprostateknowledge.org/new-options-for-treating-erectile-dysfunction

Incontinence is also a major concern. Most men need to wear “pads” after surgery and/or radiation. Kegel exercises will help make this a temporary problem pretty quickly in most cases.

More on Kegel exercises:

https://www.nafc.org/kegel?utm_source=google&utm_medium=cpc&utm_term=how%20to%20do%20the%20kegel%20exercise&utm_content=92065425991&utm_campaign=&gclid=Cj0KEQiAh4fEBRCZhriIjLfArrQBEiQArzzDAbowOW-lqmAECF3-wCt_1PJEThEC6oGik3sDbj6vMokaAvML8P8HAQ

I was lucky that I never had any long term “leaky” incontinence; I have continued to do Kegels to this very day. However I have suffered long term “urge incontinence” (you have to pee often), due to the scarring that resulted from radiation. I have become adept at timing rest room stops. If I need some extra help on plane trips or long car rides, I have relied on the prescription Oxybutynin, which is a bladder relaxant.

These side effects should not prevent you from enjoying life!

Part 7 - My personal experiences with Prostate Cancer

While I was recovering in the hospital room after surgery, the surgeon gave me one of those “good news/bad news” talks. The prostate removal had gone well, but he told me about the suspicious cells that he had found. I would need follow up radiation as soon as I had time to fully recover from surgery.

There are two types of radiation for prostate cancer, adjuvant and salvage. I had the adjuvant variety – radiation that is performed within 6 months after a prostatectomy.

More about radiation:

http://www.cancer.org/cancer/prostate-cancer/treating/radiation-therapy.html

My radiation treatments started in February, and ended in March. I had heard some horror stories about radiation. I have to admit that my experience was not too bad. I followed the instructions faithfully, and the only new side effect that I noticed was that I was very tired after a treatment.  After a treatment I peed so often that I worked from home – I could not make the half hour drive to Hartford without stopping once or twice. Lucky for me I had some understanding managers.

Part 6 - My personal experiences with Prostate Cancer

During Da Vinci surgery they lay you on your stomach, with your head lower than your feet. After 6 hours, my wife said I came back to the room with a face looking like the Pillsbury dough boy. By the time I came to, my face had normalized.

When I awoke, I was higher than a kite. I think they give me OxyContin for pain, which I usually cannot tolerate. The anti-nausea medicine they gave allowed me to tolerate it. As a result I was incredibly goofy even though I didn't remember it later. My poor wife - she waited through the surgery, and then had to put up with a comedy routine by the Pillsbury dough boy!  She was exhausted, and slept for a few hours in the room. Suddenly I had an incredible thirst and tried to wake her for some water. My mouth was so dry that I couldn’t talk higher than faint croak. Thankfully a nurse came in with water eventually.

As the meds wore off, a nurse came in and said “I’m going to make your day – I’m going to remove your catheter”.  Luckily my wife was there and set her straight. Putting a catheter back in without being drugged would not have been fun. This highlighted the fact that it’s always a good idea to have a family member to be your guardian angel during surgery – people can make mistakes!

My surgery took place during the night and by early morning they asked me if I could walk. I jumped at that chance, because I know that as soon as you could walk (and fart) you could go home. I walked several times during that morning, working up to multiple laps. During one of my walks I heard two nurses talking – one of them said “that’s the one”. I guess the news of my OxyContin-fueled comedy routine got around!

I was home in less than a day after surgery, and initially I felt pretty good. The pain was not so bad - I got by on high test acetaminophen They said to keep on walking, and I did laps around the rooms in the house. I felt well enough to attend Thanksgiving dinner the next day – hey this surgery thing is a piece of cake!

Remember that nurse’s warning about “some swelling”?  I remember back one fall marveling at a sheep’s udder at the Big E Fair – it looked so disproportionate on such a small animal. Very quickly I had what looked like a sheep’s udder between my legs!

I had left the hospital with a catheter, and the normal time that a person needs a catheter after prostate surgery is about a week. I had a one week visit with my surgeon and learned (no surprise) that I would need additional time because of all the swelling. It took a total of 3 weeks before it could be removed, and not before I was prescribed some strong diuretics. Those were 3 of the longest weeks of my life.

Once the catheter was removed, I was back at work in a about a week. But my treatments were not over yet…

Part 5 - My personal experiences with Prostate Cancer

People have all sorts of reactions when they learn they have cancer. I remember a discussion I had with a friend who had a very low stage breast cancer. She said that she often thought “why me?”  I don’t blame her for thinking this way, even though at the time I found that sentiment odd – one that I honestly never had. I was grateful to have a type of cancer that was treatable and very likely survivable. I know that life doesn’t work that way, but I thought if every family is touched by cancer, then I am the willing representative of our family with this type of cancer. 

A week or so before surgery we were invited to a preparatory meeting at Hartford Hospital. I was amazed at the number of men (and spouses) who were in the auditorium. It gave me a better idea why my surgery was not scheduled earlier - we were lined up like planes on a runway.

One thing from that meeting has always stuck with me. The nurse who was moderating the meeting said that “there may be some swelling after surgery. I leaned over and told my wife “that will probably be me”. Little did I know…..

Finally the day for surgery arrived, a few days before Thanksgiving. We checked in early, but had to wait until mid-afternoon because my surgeon faced a difficult surgery with a very large man before mine. When the time near, they gave me some very effective drugs. My doctor showed up to talk to me and I, very high and very nearsighted, asked him if he was the anesthesiologist. We had some laughs about that later.

What happened next was a little blurry. I was wheeled into the operating room, which I remember to be cold, so they gave me a blanket.  As they gave me my final meds, I saw the Da Vinci robot and asked if it had a nickname.  That was the last thing I remembered. After what seemed like a few seconds later, I woke up in my room.

My surgery actually took about 6 hours. My prostate was removed easily, but my surgeon found some suspicious cells outside my prostate bed. He had to do more than typical prostate surgery. These cells had to be biopsied, and they proved to be cancerous. My surgeon then had to remove a little more of my urethra than is usually done. During a follow-up meeting later I got my final answer to what stage I was – “2 ½”.

Part 4 - My personal experiences with Prostate Cancer

My urologist went over the typical sequence of treatments if prostate cancer progresses:  surgery, radiation, hormone therapy, and chemo. For someone in the early stages like me, the usual options were surgery or radiation. I opted for surgery and I wanted it tomorrow.  Hold your horses big fellah. I wouldn’t have surgery until November – four months after that meeting with my urologist.

I did meet my surgeon in August. I had a choice of the surgeon who had developed the robotic program for prostate surgery at Hartford Hospital, or one of his associates. I had hear that the “head honcho” lacked bedside manner so I chose the associate. I have no regrets doing that, as I feel my surgeon is excellent. But I met the “head honcho” later on and I have a lot of respect for him. I don’t think I could have gone wrong either way.

It was during this initial meeting with my surgeon that I learned in detail what prostate surgery entailed. He told me about the benefits of robotic surgery (less invasive, faster recovery time) over traditional surgery.

More about robotic surgery:

http://www.roboticoncology.com/robotic-prostate-surgery/

Before any treatment, my doctors had to determine for certain that my cancer had not spread out of the prostate bed.  I was subjected to a series of scans in August and September.  

I had a CAT scan of my abdomen and pelvis, and a whole body bone scan. I also had an MRI of my thoracic spine, followed by a CAT scan of my thoracic spine.  While these scans in themselves were not too bad, I found the waiting for results to be maddening. Most of the scans were scheduled on a Friday, and I had to sit through the weekend on “pins and needles”. I also had one more biopsy in the abdomen. Finally all the tests were in and all indications were that my cancer was confined to my “prostate bed”.  A November surgery was a go.