If you’re reading this and have prostate cancer, there’s a really good chance this article will help you. It’s based on my experience and will give you information on new genetic testing, based on a lot of research that can change your outlook for treatment, that leaves men with such dreadful side effects, and sometimes don’t even work.

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 six men will get it. Every 3.3 seconds a man is diagnosed with the disease. Every 20 minutes a man dies from the disease. ( “ZERO prostate cancer–2017 stats”) The exact cause of prostate cancer is unknown. But recent studies indicate the likely cause may be diet. You know the old saying, you are what you eat.

Read this article carefully if you or your loved one has the disease or, share it with someone who does. It will help you by guiding you to the right questions, to ask your doctor. Genetic testing has allowed me to relax and take my mind of what doctors said, which, was a clear cut case for surgery or radiation. I have a significant prostate cancer, but genetic testing says, treatment will not benefit me. And I’m not dying, or sick.

Genetic testing is not on the protocol yet, for weighing out treatment options. If you or a loved one are diagnosed, ask about Genetic Testing. As you read this article, you’ll see the major difference/impact it has made on my life and how it totally changed my treatment strategy.

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

Normally, 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 screening 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, prolong or provide some quality of life, not so much.

It’s virtually impossible to reach out and touch the lives of many men, warning them of the dangers of this dreadful cancer. Why?  Most men don’t want to talk about a disease that is so personal, and private, the words need not be spoken. 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 part of the reason why I got myself in a bit of a mess, which, against the odds, I’ve overcome. 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” use “Active Surveillance” when possible, and  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. The side effects that effect most men after treatment are, erectile dysfunction and incontinence. And both are major problems. Quite common.

If you’ve already had the surgery, the following paragraphs may apply to you.

In 2016, UCLA Urology released guidelines on how successful radical surgery and radiation are. According to UCLA Urology, 50% of all surgeries to remove the cancer, fail. The cancer comes back. Radiation has a 27 percent likely hood of the cancer returning.

Genetic testing-Decipher Biopsy: This is one of the two genetic tests I had and talk about. And how it could help you. Decipher biopsy is supported by in depth clinical studies.

http://genomedx.com/decipher-test/improving-treatment-decisions/     This is the link to the next 5 paragraphs, along with more detailed information on genetic testing of prostate cancer. Do yourself a favor, and read the information before you have treatment of any sort.

Decipher biopsy-post op. If you have surgery and it fails, the Decipher biopsy may be your saving grace. Once the surgery has failed and you’re scared of the relapse, have the Decipher Biopsy.post op, if you can. Decipher literature states that 90% of those that fail surgery, will not develop metastases or die of prostate cancer. Huge numbers. And you need to know that.  This means that – if treated after the failed surgery, patients may receive no benefit at all. Worse, they may be subject to unnecessary complications caused by post-surgery treatment for prostate cancer. Which is radiation with ADT (androgen deprivation therapy) that reduce levels of male hormones, testosterone and dihydrotestosterone.  The urologist from Memorial Sloan Kettering, Urology Group calls ADT, a form of castration. Very primitive and doesn’t work all that well.

Decipher-post op, may help avoid over-treatment by reclassifying those men originally identified as high-risk, who are unlikely to develop metastatic disease.

That means, if your surgery fails, check with your urologist/oncologist and see if you can have the Decipher Biopsy-post op. In many cases, it will allow a patient to avoid further intervention via radiation.

In clinical studies of high-risk men after surgery, Decipher reclassified 60% of men to lower risk categories3. 98.5% of patients reclassified to low risk by Decipher did not develop metastasis within 5 years of radical prostatectomy.

Across multiple clinical utility studies, 39% of physicians changed patient treatment planning after reviewing Decipher results 4,5, resulting in a 50% reduction in radiation therapy planning in those identified as low risk by Decipher.

bob after being diagnosed with prostate cancerWhat made me go public with my prostate cancer?

Almost six years ago, I watched in pain, 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.

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. Most often, but not always, prostate cancer is detected when it’s low grade and grows very slowly.

My story

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 of 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. (Note: Again, If you are over fifty, you need to have your primary care doctor check your PSA annually.)

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, other than the screening. 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 of 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, 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. I had no symptoms other than the PSA score.

Those three years that my PSA levels were elevated, I was in a difficult battle with grief, over the loss of my wife Annie. I ignored the possibility of cancer, not wanting to talk about it. But still, 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, asked me to set on the 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 Dr. Byrd 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 TRUS 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.

Through this article, hopefully, I can get a dialogue started for you and perhaps help you understand this insidious disease, a little better.

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, in my case, it’s covering approximately half of my prostate. Do to the high volume, after I have treatment, surgery or radiation, the cancer has a 50% chance of coming back. Low volume cancer, indicates a low risk of returning after treatment.  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 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 with an elevated PSA count have prostate cancer.)

But, my case is rather complicated and confusing as my PSA score is not indicative of a high volume of cancer. Still, half of my prostate is cancerous, so, it is what it is.

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. 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.

(Note: There are other treatment options out there. Including advanced cancer clinical trials. Check out/search for: UCLA Medical Center, #3 ranked Urology Group in the country.

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, it can guide you on whether you need treatment right away or if active surveillance is appropriate. It would be wise to hold onto your prostate until you need treatment.

To a urologist or doctor, the smart thing to do is get the prostate radiated, or have radical surgery to remove it. I understand their thinking, that a removed cancer can’t hurt. But as you’re seeing it a bit more complicated than that. Ultimately, it’s your decision.

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 Memorial Sloan Kettering Hospital, Urology Group, ranked fifth best 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, don’t understand it and just want it out. Of course, the doctors are happy to oblige them, as they want it out too.

And then of course, there’s this: In 2013, over 15 billion dollars was spent on prostate treatment. That’s a lot of money.

Remember what I said earlier. “I’m supposed to make a major life changing decision based on the limited information I had.”  I couldn’t do it. And you need to think about it.” If appropriate, have genetic testing. Your doctor will tell you if that’s a viable option.

After the biopsy report comes in, make sure you get a copy of the pathology report, chill, and if need be, make a request for the Prolaris biopsy, if you want to go that route. 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.

Prolaris staged my cancer at T1c. Which is a low stage and means it’s still contained within the prostate.  Pathology does not stage the cancer, but is one of the factors in staging.

Prostate cancer is staged between one and four. One being the best, four being the worst. UCLA Urology website breaks that down.
Staging the cancer is one of the most important factors in choosing treatment options. Often times treatment choices are based on staging. So, make sure your cancer is staged. Ask your urologist or oncologist what stage you are in. It really does matter.

Here’s what my Prolaris 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.

And every day I don’t need treatment, is a good day.

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 was hanging onto my prostate gland and not 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,  and he told me my PSA score was 4.6, down from 5.40.  As we knew the cancer was still there, it was a good result, but 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’s 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 at some point, 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. So I thought.

To my amazement, he said we now have the same MRI technology here at Wesley Medical Center 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 MRI. 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 new prostate 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, but they also took pictures of the surrounding area looking for any signs of cancer in the bladder or pelvic lymph nodes.

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 Gleason 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 of active surveillance.

Over treating means, treating me before it was clearly necessary. Dr. Byrd had been trying to get me to have surgery or radiation, but for now, it seems that won’t be necessary.

During our visit I spoke up, telling him I needed four more months. While I was explaining myself to him, (I wanted to go spend 50 days in Northern California Salmon fishing), his head was leaning over with his eyes closed and his fingers seemed to be massaging his eyes rather roughly. He was rather deep in thought. However, in the end he said, he’d see me in four months.

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, who 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, this time for a Decipher biopsy. This is a genetic test they normally use when a person has already had his prostate removed and the cancer is coming back. The patient is in relapse. In my case, it tells them if it’s high grade or not, gives a 5 year metastasis, and a 10 year prostate cancer specific mortality. And whether or not I’m a good candidate for Active Surveillance.

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. Then, I look at the fail rates of surgery and radiation and it becomes a catch 22. At some point, I’ll probably have to make a decision. Hopefully, way down the road.

On 15 September 2016, 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 later.

What to know

Let me stress a couple of points. Having surgery or radiation can help and perhaps cure you when dealing with a low volume cancer, caught early enough. However, before having radiation or surgery, if you’re in your mid 70’s, you might want to have genetic testing if you can, giving yourself a chance to, perhaps, ride out the cancer if it’s low grade.

If you’re in your 60’s, the decision is much tougher. But, if you qualify for genetic testing, it will give you a good snapshot of how your cancer is behaving, and may prevent you having early treatment, that you don’t yet  need. And you may be a candidate for active surveillance, which allows you get on with your life while seeing your urologist every 3 months for a PSA. And even if you don’t get the
genetic testing, low grade prostate cancer, may qualify for active surveillance. Ask your Urologist or Oncologist.

If you are in your 50’s or younger and diagnosed with prostate cancer, take the time to research the disease, before you pull the trigger on surgery or radiation treatment. Again: Considerations to the side effects need to be thought out. There’s many.  If you’re married or have a partner, you really need to have that awkward discussion with them too. If your cancer is low grade, Gleason score of 6, 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. Have genetic testing if you can. Ultimately, the decision lies with you and your urologist or oncologist. But don’t panic and make a snap decision, unless your cancer is high grade. You’ll have a good idea where you stand from the biopsy/pathology report.

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. And incontinence is almost mandatory after surgery. 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. Most do. Still, make your intentions clear on ED.  Don’t let a doctor make that decision for you.  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. Your urologist will advise you on what to expect.

Reality is, saving a life is what’s import in the final analysis. But, the side effects have to be considered by all concerned.

Decipher Biopsy

Waiting for my Decipher results to come back created a lot of anxiety to me. My fear was, that the cancer was spreading outside the prostate, based on something they saw in the MRI, that perhaps the radiologist missed.

On Oct 3rd, 2016, I got my Decipher results back. Better news than any of us expected. My Decipher score was 0.18, Genomic Low Risk Cancer. Chance of spreading in 5 years is 0.8%, 10 year prostate specific mortality is 1.5%. Lowest risk is 0.00, while 0.45 is average, so at 0.18, I’m in a good place to be with this cancer.

Interpretation as written on the report is as follows:  Among men with a low risk Decipher prostate cancer classifier score, clinical studies have shown that this cancer has a favorable prognosis. Men with a low risk Decipher score, may be suitable candidates for active surveillance and may have excellent outcomes even when treated with local therapy alone.

The Decipher test was the deciding factor on my treatment. What looked to be a cut and dry treatment plan for my significant cancer, at some point, surgery or radiation, was only true until all the facts were in. Genetic testing saved me a lot of misery, as I was listed at high risk for cancer return after surgery. As you’ve read, I no longer need it, and may never need it. Of course, nothing is certain with any cancer. The doctor tries to treat or cure it, and we do our bit, and what we can to live and fight another day.

On the 14th of Dec, I received my latest PSA score. It had now dropped to 4.1. Incredible news. My PSA is still trending down, which means the cancer is a little less active than it was last time I had it tested in mid August.

It’s now Jan 13th, 2017, and I’m still on active surveillance and doing well. My next PSA is on April 3rd, 2017.

Support Group

If you have prostate cancer, see if there is a support group in your area. I go to Wichita Prostate Cancer Support Group, and it offers me a breath of fresh air. Some folks are emotionally struggling with the disease, some are fighting metastasis (the cancer has spread), some have had radiation, some surgery, and then there’s me, on active surveillance. And we all have our own individual story to tell. And that’s what makes the group so important and so special. We emotionally support each other as best we can.

It reminds me of being in a war zone and we’re in a battle for our lives. We all have been wounded, some worse than others. Some have been hit by a flame thrower and had it (cancer) burnt out, some have been pierced by the blade and the bullet (cancer) removed, some have life altering injuries requiring continual treatment, and some are okay. But we’re all on guard duty, ever so vigilant, watching and waiting. And we all have one thing in common, “we are all survivors” of one of mans greatest adversaries.

I wish you all, the best!

Contact me privately, if you need to talk or ask a question. I can help stabilize your thoughts.
bob@thecaregiverspace.org

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