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.

Part 3 - My personal experiences with Prostate Cancer

I met with my urologist a few days after that phone call and he gave me the details of the test. The biopsy had found that 7 of the 12 samples had cancer. Four of the sample had a Gleason score of 6 or 7. I had me some cancer.

A Gleason score is used to estimate prostate cancer’s aggressiveness — meaning its potential to grow and metastasize, or spread, to other parts of the body — using the Gleason grading system.  A tumor with cells that appear close to normal is assigned a low Gleason score (six or below); low-grade tumors are less likely to spread. A tumor with cells that appear clearly different from those of a normal prostate is assigned a high Gleason score (seven or above) and is more likely to spread.  The fact that they assigned four of my samples 6 or 7 indicated (to me) that they really weren’t quite sure about my cancer.

More about Gleason scores:

http://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/prostate-pathology/prostate-cancer-pathology.html

To be perfectly honest, I didn’t pay much attention to a Gleason score – it seemed way too arbitrary and mumbo jumbo to me. I was more interested in what stage cancer I had. I remember a discussion I had with a insurance company nurse during my treatment. She asked me about my Gleason scores and I told her I wasn’t sure and I’d get back to her. I was working in the systems department at the time and I could take a peek at her notes. She was flabbergasted at my heretical attitude about Gleason scores.

My official stage at the time was T1c – non palpable (in a DRE test) but PSA elevated. I could live with that. I would later find that T1C was not quite accurate.

Part 2 - My personal experiences with Prostate Cancer

Right around the time of my biopsy, my youngest daughter was very close to the end of her pregnancy.  On the day that our youngest grandson was born, we were in the hospital visiting my grandson and his proud parents. My cell phone rang. I knew it was my urologist, so I went into the bathroom to take the call. He told me that I had cancer, and I was in shock. I went back in the room with my best brave face, but they all knew the prognosis. My daughter, already very emotional on this special day, began to cry. I felt so awful to be such a downer on this of all days.

The picture of my grandson and me always reminds me of this significant day – July 21^st, 2011. I’m welcoming our fifth grandchild into the world, and a few minutes later I receive my life changing news.

I would remiss to not mention the wonderful support that I have received from my family. My wife of 39 years has been my rock when I’ve been down. My two grown daughters and their husbands have been very positive when I’ve needed a boost. All of my grandchildren were too young when I went through my initial treatments, but I’m confident that my grandchildren will lend additional support in the future. There’s nothing better than family!  And friends are great too!

My personal experiences with Prostate Cancer in more detail

When I reached somewhere around the age of 50, my family doctor began the dreaded DRE’s (digital rectal exams).  Although not painful, DRE’s are just plain uncomfortable. Some prostate cancers are found via a DRE. My exams never showed any signs of potential prostate cancer. My family doctor did several DRE’s, and the two urologists that cared for me also did several, but they never found any signs despite multiple exams.

Here is more about DRE’s:

http://www.webmd.com/colorectal-cancer/digital-rectal-examination-dre#1

My family doctor noticed that despite being low, my PSA values had been slowly climbing. He referred me to an urologist, who continued the DRE’s, but had no concern about my rising PSA scores. I had a couple of appointments with him. I didn’t care for this urologist, so I asked my family doctor to refer me to another. This would prove to be a good move.  I want to emphasize that if you don’t have a good relationship with a doctor, find another. This has always worked out well for me.   

My new urologist was part of a group practicing out of Hartford Hospital. He was rather dry initially, but unlike the rushed, rather arrogant demeanor of my previous doctor, I knew that he would be fine to work with.

He quickly became concerned about my PSA. Though it wasn’t terribly high (4.5) it had been steadily rising over the course of the last couple of years. He set me up for a biopsy.  Just the word “biopsy” sent shudders through me. This was the first time I realized that I could have cancer. I don’t care what type of cancer a person has – cancer is a scary word.

The biopsy was quite an experience. Samples were taken between the scrotum and the anus. Some people claim that this type of biopsy is very painful. I found it to be a little uncomfortable, but not too bad. I liken it to getting a small electrical shock in a delicate area. I flinched whenever they took a sample (they took a total of 12). I apologized to the technician when I first flinched. He told me not to worry – by the time I flinched his instrument had already taken a sample.

Here’s a little more info on prostate biopsies:

http://www.webmd.com/men/prostate-biopsy#1

Here are some misconceptions about prostate cancer:

https://www.pcf.org/c/10-myths-and-misconceptions-about-prostate-cancer/

PSA testing

I’m going to repeat this from time to time…. I am not an expert. If you have any thoughts that you may have prostate cancer, please consult a physician.

One of the tools that urologists use to diagnose and monitor prostate health is the PSA test.

Prostate-specific antigen (PSA) is a substance made by cells in the prostate gland (both normal cells and cancer cells). PSA is mostly found in semen, but a small amount is also found in the blood. Most men without prostate cancer have PSA levels under 4 nanograms per milliliter (ng/mL) of blood.

PSA test results are not foolproof. Many people with elevated PSA scores do not have cancer, and a low PSA score does not always mean a man doesn’t have cancer. It’s almost as if there is some art with that science. Common practice in the United States has been for men with a PSA score higher than 4 nanograms of antigen per milliliter of blood to get a biopsy to look for cancer. Prostate biopsy can be an unpleasant procedure, involving the insertion of a probe in the rectum and retrieval of several tissue samples from the prostate. Among men in their early 50s or younger, a PSA score of more than 2 tends to raise red flags for urologists.

There are a lot of varying opinions about PSA testing.

Prostate-cancer mortality has been declining slowly since 1996. The decline was anticipated to start at about that time after PSA tests were introduced in the late 1980s.

In recent years, several medical groups have come out against previous recommendations for PSA testing.  Here are a couple of articles about PSA testing:

http://www.cancer.org/cancer/prostate-cancer/early-detection/acs-recommendations.html

http://www.uptodate.com/contents/screening-for-prostate-cancer

Even when prostate cancer is found, a patient and his doctor are confronted with the bedeviling question of whether and how to treat it. Doctors agree that many of the cancers represent no health threat.

However, they also know that prostate cancer kills 29,000 men annually, and there is no way to differentiate between tumors that kill and those that do not. The number of prostate cancers caught before they spread to other areas of the body has increased dramatically in recent years, a trend some attribute to PSA screenings.

My cancer has now metastasized, but I am quite confident that with current treatment regimens, and with research that may lead to future treatments, that I will be “on this side of the grass” for several more years. From personal experience, I am convinced that without PSA testing, and subsequent treatment. I might have either been very sick or have already died.

A brief anatomy lesson

Prostate cancer death rates are down over the past 20 years due to advances in detection and treatment. Here’s hoping that ongoing research will convert all prostate cancer (actually all cancers) into a chronic disease like diabetes – a disease that a person can live with.

What is a prostate gland and what is good for?

The prostate gland is a male reproductive organ whose main function is to secrete prostate fluid, one of the components of semen. The muscles of the prostate gland also help propel this seminal fluid into the urethra during ejaculation .

The prostate is a muscular gland that weighs about three-fourths of an ounce (20 grams) about the size of a small apricot. It surrounds the urethra just beneath the bladder .

If you want additional information, check out more of this article:

http://www.livescience.com/32751-what-does-the-prostate-gland-do.html

Here’s a visual of the prostate:

http://www.medicinenet.com/image-collection/prostate_gland_picture/picture.htm

When I first met my surgeon to discuss surgery, I had little idea of the exact location of the prostate gland, and what surgery entailed. When he told me that he was going to cut the prostate out near the bladder, and also at the urethra, and then reattach the urethra to the bladder, I was stunned. So if you are considering surgery for prostate cancer, spend a little more time than I did researching the procedure!

More information on prostate surgery:

http://www.cancer.org/cancer/prostate-cancer/treating/surgery.html

Here is a rough timeline of the events that I experienced:

I received my prostate cancer diagnosis on July 21^st, 2011. I had a prostatectomy in November of 2011. I received radiation in February and March of 2012. My surgeon then monitored my PSA’s every few months, which held steady at 0.1 until April of 2014, at which point they started slowly rising. I hit 0.2 (considered an indication of biochemical recurrence) in September of 2014. My surgeon believed that any cancer in my body would be undetectable at a PSA level of 0.2, so we continued to monitor my PSA’s. I then had successive readings of 0.3, 0.6, and 0.7.  My doctor ordered a CAT scan and bone scan when my PSA read 1.1 in July of 2016, but these were negative.

I thought that my gradual ascent would continue for quite some time – maybe 5 years or more. Let’s keep kicking than can down the road. I was shocked when my next reading jumped to 11.2. I figured it was a mistake, based on the last 5 years of readings. The PSA test was repeated, and it was even higher.  I had crossed the threshold – I now had advanced prostate cancer. I will share in more detail a little later how I got here.

I make jokes about my prostate cancer from time to time, but that’s just my way of handling it. Cancer is no joke. I have had my dark moments but I refuse to give into it. My cancer is always whispering in my ear – not every day, but quite often. At least I’m alive to hear those whispers.

Prostate cancer is considered one of the ‘better cancers” – it tends to grow slowly. When caught early, many men appear to be cured – I personally know a few men who have had no problems 15 years after treatment – there may be others who have gone longer. Autopsies of elderly men have shown that a large number had prostate cancer, even though they didn’t show symptoms and they died of something else. In a majority of cases, it grows slowly.

Some prostate cancers are more aggressive. If these prostate cancers are not treated and they metastasize, they can morph into very serious cancers. This is not a pleasant way to die. There are some men who choose to “watch and wait”, their cancers do not spread, and they live out their normal lifespan.  The problem is that it’s sometimes difficult at the onset to determine what type of prostate cancer a man has.

Here are a couple of articles that go into more detail on this subject:

https://www.verywell.com/what-happens-if-prostate-cancer-is-not-treated-2782034

http://www.news-medical.net/news/2004/06/09/2271.aspx

First blog - intro

My name is Mike Dziadzio and I live in Enfield, CT.

I created this blog to share some of my prostate cancer experiences with other men who have it, and also to let family & friends know how I’m doing.  Initially this blog will be mostly retrospective – how I got here from there. Then I plan to continue to post as events unfold.

I’ve learned a little bit over the years, discussing prostate cancer with doctors, with friends who have had it, attending support group meetings, and reading a lot of stuff online. Doctors tend to not want to prognosticate – they like to deal in facts. My friends have mostly been ”clean” for years and seem to have beaten prostate cancer. The support group meetings sometimes have not applied to what I’m currently going through (though I strongly recommend them).  A lot of medical  internet articles tend to be very technical – some of them make my head spin. So I decided to start a blog of what I knew – maybe it will be of some help to someone who just found out that they have prostate cancer. Since I started collecting my thoughts for my blog I found a bunch of other blogs (why I never looked for any before this is beyond me).

 I will also not assume that my readers know anything about prostate cancer (even though I’m certainly no expert). So if you’re looking for experts, try these other blogs.

http://www.healthline.com/health/prostate-cancer/best-blogs-of-the-year#7