Prostate cancer is the #1 most common cause of cancer in men worldwide and #2 in the USA. It is estimated that one in every seven men will get it. The exact cause of prostate cancer is unknown.
Here are some of the early warning symptoms, that may or may not be prostate cancer:
- Burning or pain during urination,
- Difficulty urinating, or trouble starting and stopping while urinating,
- More frequent urges to urinate at night,
- Loss of bladder control,
- Decreased flow or velocity of urine stream,
- Blood in urine
Often times when the symptoms show up, it has not been caught early, but perhaps early enough to be treated successfully–All men over 50 need to have their prostate checked and a PSA blood test annually–if a father or brother has had prostate cancer, some studies suggest a man should consider having a PSA test as early as 35 years old.
In an effort to keep this article simple, I’m going to speak about what the man needs to do, and not about all the scientific stuff that’s better off left to the scientists. Science is complicated, what needs to be done to save or prolong a life, is not.
It’s virtually impossible to reach out and touch the lives of many men, warning them of the dangers of this dreadful cancer. Why? Men like me, don’t want to talk about a disease that is so personal, and private, it need not be made public. Therefore, the voice of reason is silenced.
Most prostate cancer deaths in men occur between the ages of 50 and 60, then jump to 80 and above. Reason being, younger healthy men will not go get screened, it can’t happen to them. So they say. Ignorance is bliss. And that’s basically the attitude I took and why I’m in this mess now. For those over 80, they’ve usually had it for a number of years and it’s run its course.
Through my story, my goal is to help you “safely” keep your prostate in your body as long as you can, if that’s your desire. Treatments, such as surgery and radiation come with some not so good side effects. Two of the main side effects are erectile dysfunction and incontinence.
If you don’t have any concerns from erectile dysfunction, then surgery or radiation in the early stages of the cancer is a good option for you. Cancer can’t hurt you if it’s not there.
That picture is me. The day my life changed forever, again!
What made me go public with my prostate cancer?
Almost six years ago, I watched in horror as my wife Annie lost her battle with a dreadfully painful cancer, multiple myeloma, that left her with many broken and very badly diseased bones.
Once prostate cancer spreads to the bones, Dr. Grant Rine, radiology/oncology, Wichita, Kansas, who was Annie’s radiologist, told me prostate cancer can be like Annie’s. Very painful and debilitating
So, I’ve decided to lay all the cards on the table, and discuss a subject that most men will not. And, I felt like the best way to do that was to reach out to the wife or partner in a man’s life.
This is important information and can save some lives through early detection, not to mention the burden and emotional instability the treatments can place on a patient, and most of the time the effects it has on the woman or partner in a relationship. I will talk about some recent techniques that make the decision on when to have radiation or radical surgery much easier. And discuss the possibility of being over treated, meaning, having treatment too soon, when treatment may not be required for several years. Usually, but not always, prostate cancer grows very slowly.
During a routine physical exam by my family doctor in Jan 2016, he noted that my PSA, a simple blood test that measures the level or a protein called prostate-specific antigen, a part of the screening for prostate cancer, was still elevated at 5.40 ng/ml, and that I needed to go back and see Dr. Byrd, my urologist. I was scheduled for an appointment to see Dr. Byrd on, I believe Jan 21, 2016.
Most insurances and Medicare recognize a PSA score of 4.0, as the standard when action needs to be taken and will be covered by them. Under 4.0 they won’t usually do anything, or pay for anything. Of course, once diagnosed with cancer PSA tests are administered as needed.
On the 21st of Jan, 2016, I saw Dr. Byrd. After chatting with me about my PSA results, he leaned over and got a plastic glove out a box, which was my cue to lower my pants. He then had me lean over the bed and he inserted his finger into my rectum to check my prostate for nodules or any enlargement. To the touch, my prostate was normal.
After the examination he told me that as I had no signs of infection or enlargement of the prostate, which can raise the PSA levels, so my chances of having prostate cancer were about 35% and it would be wise to get a biopsy and rule it in or out.
There was no hesitation in my voice, as my PSA score had been elevating slowly over the past 3 years, starting in July 2013 when it was 4.20. During that time frame July 2013 to Jan 2016 I had 5 screenings and all were elevated but one, and it was 3.84. So I kind of knew I had prostate cancer.
Those three years that my PSA levels were elevated, I was grieving my wife’s loss and ignored the possibility of cancer. But, I spent a lot of time doing research, reading anything I could on the cancer, to include understanding the treatment options, all the side effects of the treatment, and the biopsy. Now I would be putting all that knowledge to use.
Feb 3rd, 2016, I had my prostate biopsy. I was not anxious, in fact, I was very calm. The nurse left the room while I stripped down and put a gown on. She then came back in, sat me on a bed and told me that the doctor would be in soon. (Three days prior to the biopsy I was put on antibiotics to help ward off infection.)
When he came in, he had me lay on my left side, with my buttocks extending a fraction over the edge of the bed. He then inserted the Ultrasound probe, which is about the size of a finger into my rectum, for a guided needle biopsy. A needle is inserted through the probe to numb the prostate before the tissue samples of the prostate are taken. Once numb, Dr. Byrd went all around my prostate and took 12 core samples. The procedure took about twenty minutes and although uncomfortable, was not painful. (note: some doctors do the biopsy while the individual is lying on his back or stomach)
After the procedure he told me that I would have some rectal bleeding, especially during bowel movements for a few days, and maybe longer. The blood in my semen can last up to 6 weeks, and some cases 3 to 4 months. All of which is normal.
My rectal bleeding was over in a week or two at the most, and semen was normal in about three weeks. In the semen the blood is usually a rust color and as it heals, turns brownish. My blood looked like Ketchup for a few days then turned to the rust color.
It’s okay to have intercourse after a biopsy, but studies suggest you wait a couple of days, as the strain may cause more blood in the semen. You’ll know if you’re aggravating your prostate by the color of the blood. It’ll be bright red.
Everything we’ve talked about so far has been relatively benign or straight forward. From this point on, my life got very tricky, dealing with both the known and the unknown. And I have no one to blame but myself. I shouldn’t have let it get this far. Action three or four years ago, a biopsy, would have been wise. I just didn’t understand, but through this article I can get a dialogue started for you and perhaps help you understand.
On 13 Feb, 2016, I went back to Dr. Byrd’s office and received my pathology report. Out of 12 core samples, 6 were malignant. I knew that couldn’t be good.
I essentially have a high volume cancer, meaning, after I have treatment, surgery or radiation the cancer has a high percentage rate of coming back. And therein lies the problem for me. Surgery may or may not help me. Studies show, that a patient with a high volume cancer with over 50% volume, don’t do very well long term. And that’s with or without treatment. My cancer was not caught as early as we first though. Lack of symptoms, or failing to recognize the symptoms caused the problem for me. (Only about 25% of all men that present with an elevated PSA count have prostate cancer.)
But, my case is rather complicated and confusing as my PSA score would not indicate a high volume of cancer. Still, half of my prostate is cancerous, so it’s likely to be high volume.
Five of the samples were low grade cancer, Gleason score of 6. But one was intermediate grade with a Gleason score of 7. Essentially, I had an intermediate grade cancer due to the 7. And that one sample is what’s causing all the problems. A Gleason score of 8-10 is a high grade cancer, likely to spread rapidly. The pathologist assigns the Gleason score.
After Dr. Byrd spoke to me for awhile, he gave me a list of treatment options, the two viable ones were, radiation or surgery.
He asked me what I wanted to do.
I told him nothing at the moment, I needed some time to think about it. I asked for three months with active surveillance, and he said okay.
All the literature and research I’ve read says, upon initial diagnosis, unless the cancer is considered high grade, step back, take some time away and do some research on your options.
For whatever reason I was still uncomfortable with the situation as it presented itself. So I said to him, I’m supposed to make a major life changing decision based on this information. Is this it!
He thought about what I said for a minute, then said, there is one thing we can do. A Prolaris Biopsy, but it’s expensive and your insurance might not pay for it. It could be as much as $4,000, or simply a co-pay of $379. He had the nurse run it through my insurance, Medicare-Tricare for Life, and it was covered 100%. I said, let’s do it. He smiled saying, it will be interesting to see just how involved the cancer is.
Prolaris testing is a genetic test of a sample of the biopsy I recently had. If you or a loved one has prostate cancer, check this out, www.prolaris.com it can guide you on whether you need treatment or if active surveillance is appropriate. Like I said, hold onto your prostate until you need treatment.
To a urologist or doctor, the smart thing to do is get the prostate radiated, or removed. I understand their thinking, but they do not have to live with the side effects of either treatment.
Three months ago at my prostate support group, I watched a 6 month old video, the speaker was one of the top urologists in the country. He was working at Kettering Medical Center, one of the top 3 prostate cancer hospitals in the nation. He said, one of the most difficult challenges for him is seeing all the men that come to him for help. Their sad statement is–why did I have surgery so early, when I probably had several years before needing treatment. According to the urologist, it happens because the men are freaked out by the cancer, and want it out. Of course, the doctors are happy to oblige them, as they want it out too.
Remember what I said earlier. “I’m supposed to make a major life changing decision based on this information.” I couldn’t do it! And you shouldn’t.
After the biopsy, make sure you get a copy of the pathology report, chill, and then request the Prolaris biopsy. Once that’s done, you can compare the two and if you were leaning towards treatment, radiation or surgery, there’s a 40 to 50 percent chance you will change your mind and choose active surveillance.
March 14th, 2016, I got my Prolaris results back.
It staged my cancer at T1c. Which means it’s still contained within the prostate. And that’s what you want to hear. Outside the prostate would not be good. It also gave me a life expectancy based on my cancer.
Here’s what it said: “This patients 10 year risk of prostate cancer specific mortality is 4% with conservative management. Mortality risks could be altered by various therapeutic interventions.”
In other words, if I go on active surveillance, have a PSA test every 3 months, and a visit with my urologist, that is considered conservative management. If something were to go wrong, the doctor would likely detect it in time to do treatment. Surgery or radiation.
When I left the doctor’s office that day, I was upbeat and feeling good. If I hadn’t pushed for more information, I would never have known about the Prolaris test. And I now knew for sure, I still had my prostate gland and I wasn’t in any danger at the moment. I would be seeing Dr. Byrd again on May 13th, 2016 with fresh PSA test results.
May 13th, 2016, I walked into Dr. Byrd’s office. We had the usual chat, he examined my prostate again, and told me my PSA score was 4.6, down from 5.40. But, as we knew the cancer was there, it didn’t mean much at the time.
Dr. Byrd asked me what I wanted to do, and I told him I wanted 3 more months. I think it kind of aggravated him a bit as he sharply said, Bob, you’re going to have to deal with this sooner or later, it is not going to go away.
Dr. Byrd was advising me, but not in a way that I didn’t have some wiggle room to make my own decision. In other words, I’m not going against medical advice, I actually agree with him on surgery, but I want more time and information before I make a decision.
Before I left, I told him I’d like to go to Kansas City, and get a prostate specific MRI. Once I had those results, making my decision would be based on everything I could possibly know.
To my amazement, he said we now have the same MRI technology here at the hospital as Kansas City, and training the techs is ongoing.
Since I was due to see him again in mid Aug, we set the MRI up for the first week of August. He said he needed 6 months between the biopsy and MRI, in case the prostate was still inflamed a bit.
August 1st, 2016, I had my prostate specific MRI. (Key words: Prostate Specific) The urologist would now be able to see the cancer, up close and personal. According to the radiology tech, I was the first patient to have the prostate specific MRI in our area. Which may or may not be true. I was in the tube from 1pm until 2:55 pm. Allegedly, again, according to the tech they took 2,000 pictures. Seemed like a lot to me.
A week later I had my PSA blood work done, with the results being faxed to Dr. Byrd.
August 15th, 2016, I went back to Dr. Byrd’s office with a copy of the CD given to me after the MRI to hand carry to my appointment.
Dr. Byrd went over the written report with me. The good news was, we now had a definitive determination that the cancer had not spread beyond the prostate as my entire pelvic area was clear. It’s never 100 percent for sure, but it looked good and the best they can do at the moment.
The prostate was basically as he thought it would be. There was one area, the 7, I talked about earlier in this article, that was and is concerning. This is the exact wording on the report. “High clinically significant cancer is likely to be present.” I knew it, but not in those worded terms.
My PSA had dropped again, from 4.60 to 4.30. I asked him why that was happening and he said, to drive me crazy, meaning him.
He went through all the paperwork, then shocked me by saying, if I treat you now, I run the risk of over treating you. He said I could have three more months.
Over treating means, treating me before it was clearly necessary. Dr. Byrd had been trying to get me to have surgery for 6 months at that time, but now that we had all the facts, I probably have a bit more time.
I spoke up, I need four more months. While I was explaining myself to him, his head was leaning over with his eyes closed and his fingers seemed to be massaging his eyes rather roughly. Before he could remove his hands I said, I’ll bring you back some fresh smoked Pacific Wild Salmon from my fishing trip. He laughed, like what am I going to do with this guy.
That was a high five moment for me, but he didn’t know that.
But as I was starting to learn, sometimes when things seem to be too good to be true, they may be.
Aug 26th, 2016, I got a call from Lauren, Dr. Byrd’s nurse, and she said that Dr. Byrd had rescinded my active surveillance program for now. He apparently looked at the CD of the MRI at some point after my appointment and saw something that was troubling to him. So in a group meeting with all the urologists they looked at the CD and the consensus was, I need further genetic testing.
Aug 29th, 2016, another sample of my biopsy was sent off for a decipher biopsy. This is a genetic test they use when a person has already had his prostate removed and the cancer is coming back. It is also useful in determining if my cancer is high grade, and how likely is it to metastasis (spread). This test will tell them if I’m a good candidate for active surveillance or if I need some sort of treatment.
Here’s the thing. I know at some point I’ll need surgery or radiation, and that’s just how it is. But, until all the stars line up, I’m hanging onto my prostate.
Some days, I simply feel like rolling the dice and taking the ten years or whatever I can get, and leave the cancer alone. Then, I flip the coin over and realize, what a selfish, foolish, act that could be to my loved ones. It’s a catch 22, but, ultimately my choice.
On 15 September 2016, and my decipher biopsy came back inconclusive. The lab said they did not have enough information to make a determination. And I don’t know what information their speaking of. I do know the information was resubmitted a few days ago.
What to know
Let me stress a couple of points. Having surgery or radiation can help and perhaps cure you when caught early enough. If you’re in your in your mid 70’s, you might just want to ride out the cancer if it’s low grade as you’ll probably pass of something else.
If you’re in your 60’s or younger, the decision is much tougher. If you don’t have treatment you’ll probably die from the cancer over an extended period of time, and you might not. But if you have the genetic testing, and are a candidate for active surveillance, you can get on with your life and see your urologist every 3 months for a PSA. And even if you don’t get the genetic testing, low grade prostate cancer often does qualify for active surveillance.
If you are in your mid 50’s/60’s and diagnosed with prostate cancer, take the time to research the disease, before you pull the trigger on surgery or radiation treatment. Considerations to the side effects need to be thought out. There’s many, but erectile dysfunction and incontinence are the most common. If you’re married or have a partner, you really need to have that awkward discussion with them too. Many of the leading urologist recommend keeping your prostate as long as you safely can through active surveillance, avoiding the side effects as long as possible, ultimately, the decision lies with you and your urologist or oncologist.
What I’m saying is this. If you have a low grade, low volume cancer, which most are, Gleason score of 6, you may not need treatment for many years. That’s a big deal to a happy couple with an active sex life. Psychologically, to a man that loses his manhood, it can be devastating. Counseling is often times recommended.
But, if you do need to have surgery, make sure your urologist/oncologist know how you feel about erectile dysfunction, and that they practice nerve sparing surgery. If the nerves are spared, and sometimes they can be, there’s a good chance the little blue pill will get you where you want to be. Without the nerves, well, if your under 60 they can grow back in two years, but the literature says, by then, the man is usually so messed up, well, as they say, you’re only as good as your last erection.
Reality is, saving a life is what’s import in the final analysis. But, the side effects have to be considered by all concerned.
When I get my results back from the decipher biopsy I will post them in a part 2 blog. Same title.