ANOTHER ROLLER COASTER RIDE

I have been quite for a while as I recover. But I wanted to continue my story…

As we met with the oncologist, he thoroughly described my staging and reviewed the NCCN Guidelines.  According to the Gleason score and high percentage volume involvement, of at least two specimens, my prostate cancer staging, according to the American Joint Committee on Cancer was the following:  

pT2b or PT2c with most likely no node involvement (NO). 

If this sounds confusing, it’s really not as long as you have a legend to follow.  For reference, you can follow the attached diagram.  But just as a quick explanation, the “p” along with the “T” refer to the pathologic staging of the primary tumor and how much of the organ is involved.  This is designated with the prefix pT2-4 referring to the extent of the prostate gland involvement (minimal, one lobe, two lobes, whole organ and surrounding tissues). 

The other letters refer to lymph nodes and distant metastasis, N and M, respectively. The N is staged from X-1, ranging from no lymph node sampling to node metastasis. The M is staged from 0-1C, indicating no metastasis to bone involvement.

As we heard about the staging, we felt some optimism.  But then the doctor described percent success rates with and without androgen deprivation therapy. Wait, what?  I had already decided on a course of treatment that I wanted. What was happening?  Furthermore, I was now told that I would first have the radioactive pellets placed in the prostate and then four weeks later I’d have the external beam treatment.  

We were also told about the precautions I would need to take with having the pellets in terms of holding babies.  Mind you, I have a baby grandson (nine months old during this occurrence).  When he told us that the pellets never stop giving off radiation, I was paralyzed.  Although I had read that the pellets would not be a danger in terms of holding a baby, the radiation oncologist said that holding the baby on my lap for a long period would not be advisable for three to six months.  To say I was shocked would be an understatement!

Then came the other bomb.  We were told that because of the enlarged size of my prostate, it would be highly recommended that I have ADT first to decrease the size to allow for safer placement of the pellets.  Now I became numb.  How did I go from having a choice on the ADT to now it almost being required?  Not only that, the percent survival at later years were also improved when adding this therapy.  As with any treatment, there were several possible listed side effects from radiation and ADT. 

My world was absolutely rocked!  I felt like someone had pulled the carpet from underneath me!  What I thought was an appointment to go over the treatment protocol and start scheduling sessions, became a bombardment of information that was overwhelming and surprising! However, given the intermediate, unfavorable category of my prostate cancer, made sense.  It was just unexpected.

Well, the other option, which I had totally ruled out before this visit was surgery. However, we were told that obviously, we would have to make that decision.  And obviously, there were also some side effects discussed with the surgery.  We were told that although no medical professional could force me in any certain direction, given my age, surgery could be a viable option.  I left this appointment with totally dejected.  Needless to say, it was a very long night!

To be continued…

CONFUSION ABOUNDED

So we thought we were ready to embark on the radiation pathway. Yep, I thought a one time procedure of pellet implantation was very desirable over 40 external beam treatments. This would be much less disruptive to my schedule.

Furthermore, I had a conversation with at least two people who either had external beam or pellets with external beam. But before I committed to any type of treatment, I was still confused about what I had heard at one of my urologist appointments regarding my Gleason 7 score. This was confusing to me. But after doing some research, it seems that even if most of the core specimens are 3+3 and only one is staged at 3+4=7, the person is staged according to the higher number.

So the Gleason system is based on the assumption that the higher number is representative of what’s actually occurring. Here I am thinking that sine most of the core biopsies were a Gleason 6, that’s what was representative of the cancer. Oops, I guess NOT!

Oh well. I had to stay on track. I had to keep moving forward. So next stop on this train was an appointment with the oncologist at the cancer center. I was ready. My wife and I had discussed this and made up our minds on the treatment plan and was ready to go and get this radiation thing scheduled and started. But I could not have been less prepared for what came next.

Continued….

THE RECONNAISSANCE MISSION

After having heard about my treatment options, I was determined to speak to someone who had been through radiation. However, my quest was more specific than just anyone. I was on a mission to hear from someone around my own age who had been through radiation treatment.

So through a friend, I was able to speak to a gentleman who had a history a higher Gleason score and went through both brachytherapy and external beam treatment. And he was doing well with minor side effects. So after this conversation I was encouraged and ready to go forward. So I thought.

After this conversation, my wife and I met a couple who were nutritional vendors promoting a vegan lifestyle. The gentleman had a significant history of prostate cancer, however, his had metastasized. He underwent both surgery, testosterone suppression therapy and radiation. He shared research information about how a diet free of animal products and low in saturated fats, was known to protect against prostate cancer and actually reverse the process.

The name that stuck out the most during our conversation was Dr. Dean Ornish. He authored a study in the Journal of Urology, which detailed the effects of an “intensive lifestyle change” on men with early, low grade prostate cancer. The study showed that the PSA revealed a 4% decrease on the experimental group versus a 6% increase in the control group. Furthermore, there was an decrease in the growth of cancer cells of up to 8 times as much in the control group.

This sounded groundbreaking! But was it truly real science? This may not be mainstream, I thought, but certainly worth some attention. Furthermore, Dr. Ornish may not be a cardiologist or nutritionist, but even the American Cancer Society recommends a reduction of saturated fats and reducing red meats.

Although this gentleman had some side effects, his claim was that they were improved with a vegan diet. Although I was not totally ready to bet the farm on these claims, it was clear that there were at least anecdotal evidence. So we did research on a vegan diet and decided to adopt this practice. I had nothing to lose. And my wife, in a demonstration of love and support, decided to adopt this lifestyle with me. (Mostly because she’d be doing the cooking anyway. LOL)

Our hope and prayer was that God would use this change in diet in conjunction with the upcoming radiation treatments to give me good outcomes. But wasn’t totally sure if this was my treatment option for sure. I still had a consult with the Cancer Center.

THE GLEASON GRADING SYSTEM

Remember the numbers associated with my biopsy specimens? Let’s get back to those. During my phone conversation with the urologist before my vacation, I was told I had a “Gleason 6” staging. Or maybe I understood that in my mind. Remember this, it will be important later in the journey.

Normally the pathology report will list each specimen or “core” (named such because it’s a “core needle biopsy”) separately by a number assigned to it by the pathologist, with each core, having its own diagnosis. The cores are listed separately because If cancer is found, it’s often not in every core, so the each core has to be examined separately to accurately make a diagnosis.

Pathologists grade prostate cancers using numbers 3 or higher based on how much the cells in the specimens look like normal prostate tissue under the microscope. Grades 1 and 2 are not used. Instead, if the core sample present with cells that look normal, it is designated as “benign.” This is called the Gleason System. Most biopsy samples are grade 3 or higher.

Since prostate cancer specimens can often have areas with different grades, a grade is assigned to the two areas that make up most of the cancer. These two grades are then added together to give the Gleason Score. In this system the higher the number, the more likely the probability of spread and thus the higher stage the cancer. The highest a Gleason sum can be is 10. Recall that the numbers are designated as a sum: 3+3, 3+4 or 4+3. The first number assigned is the grade that is most common in the specimen. For example, if the Gleason score is written as 3+4=7, it means most of the tumor is grade 3 and less of it is grade 4, and they are added for a Gleason score of 7. This sum can also be designated as 4+3=7. Although this is the same Gleason score, most of the cancer is grade 4, which is obviously higher. If a tumor is all the same grade (for example, grade 3), then the Gleason score is reported as 3+3=6.

Although most often the Gleason score is based on the two areas that make up most of the specimen, when a core sample has either a lot of high-grade cancer or there are three different grades including high-grade cancer, a higher score is determined to reflect the aggressive nature of the cancer.

The other significant part of the pathology report, besides the Gleason score is the volume of each specimen. This basically refers to the percentage involvement that each specimen is affected by cancer. For instance, one of my specimens, the one graded at 3+4, had 50% volume. And one of the 3 + 3 specimens had 40% volume. These are consistent with a possible greater involvement of the prostate gland and a greater possibility of spread.

This certainly was a cause for concern. However, I already knew from the scans that there was no spread. Next stop: Treatment Plan.

As we continue to raise awareness for prostate cancer, please remember men: Although there may not be a hard rule for screening, talk to your doctor about a PSA test if you’re between 45 and 55 years old. Screening should be done at 40-45 years of age for African Americans, Latinos or if there’s a strong family history.

THE SCANS

So what’s it like to hear you have cancer right before a vacation? Well, let’s just say that it wasn’t in my bucket list.

After our vacation, came the follow up visit. As it had already been related to me, I would need some diagnostic studies to rule out any spread. Oh yeah, I guess this is a good time to say that I’m a doctor and I was very familiar with all these steps. Familiarity, however, didn’t add any level of comfort. It did however, allow me to cut out the middle man and schedule my own tests! In my sense of losing control I needed to feel like I still had some, even if it was in my own head.

As I laid motionless on the hard, cool table for the bone scans, I could see my images on the screen and immediately knew there was no spread. I guess my knowledge was helpful in this case. But I also knew that the next step involved a discussion of treatments. And I knew that I was facing radiation or surgery. However, I thought for a moment how someone in my shoes would feel if they didn’t have the medical knowledge that I did. Would they feel lost, out of control and helpless? I think they would. Because in a way, so did I.

I guess I also have to share at this point the fact that my darling bride of 23 years was with me during these visits. It was very reassuring to know that I had her support. I told her she didn’t have to go with me but in a very assertive way, with a not so nice look she said, “shut up!” That made me happy.

To be continued…

The Start Of A Journey

About two months ago we embarked on a new journey. Although, I got ticket for this ride when I was by myself, it became apparent rather quickly that this would be a trip for two. A journey or a trip usually implies something new and exciting. Although we are experiencing something new, it’s not necessarily exciting.

There’s no better place to start other than the beginning. So here it goes:

I just recently had my first physical in at least 13 years! Yeah, yeah I know. This in spite of the fact that there’s a strong history of prostate cancer in my family. Well, the same evening of my physical and blood work, I received a call from the doctor’s office advising me that I would need to call to schedule an appointment “to go over the blood work.” That’s never a good sign.

Well, I called the next day, which happened to be a Saturday, and was told I could walk in. I was told that my PSA was elevated. For those of you that don’t know, the PSA stands for “prostate- specific antigen.” which is a protein produced by both cancerous and non cancerous cells in the prostate. There is normally a small amount of this protein in the blood, so the PSA blood test is a screening tool for possible prostate cancer.

Back to my PSA. It was 16 ng/mL. To put this in perspective, a range of 0-2.5 ng/mL is considered a safe zone. This however, can vary a little by age. Anything over 4-5 ng/mL will most likely be followed by a discussion with a medical provider. So obviously there was cause for concern. Was my father’s history of prostate cancer making its fateful appointment with me? I was told that an appointment would be made for me with a urologist. After an initial visit and a repeat PSA blood test, my value was still high, 14 ng/mL. Now came the moment of truth: “We’ll have to do a biopsy.” Each stop on this ride became a little more serious and a little more surreal.

If you’re a man between the ages of 40-50, please get a physical and a simple PSA blood test.

To be continued…

Loving In The Storm

Why me? This is usually the question we ask ourselves in the midst of a trial, an obstacle or a difficult situation. What if we started asking, why not me? Would anything change? Would it make a difference? Would we be better equipped to face a life storm?

I don’ know. Maybe. But those times of doubt, fear and anxiety will still be present. Yes, they will. However, by focusing on God’s word and His promises in and during a storm, by focusing on what can be learned, by focusing how to stay strong and positive and by focusing on the love of a spouse and/or friends, our mindset will be more positive, which will give us strength to fight battles.

You ask how I know? Because I’m in the eye of a storm right now! And although I’ve had moments of despair, fear, anxiety and doubt, three things have helped and continue to comfort and strengthen me:

1. God’s word on which I meditate daily

2. The love, strength and support of my wife (and my kids)

3. The prayers, messages from friends and talks with friends and people who have been down this road

What follows over the next several weeks is a description of the life storm that we find ourselves in at this moment. It is my battle with prostate cancer. More correctly stated, “our battle.” Because I do not fight alone but with the Lord by my side and as “won” with my beautiful, loving wife. My hope and prayer is that this would serve as, first of all, a testimony to God’s grace. Second, an example of how the love, sacrifice and support of a spouse can give strength and courage. And finally, as a resource to men who have been diagnosed with prostate cancer.

The fact that I love my wife may be evident by anyone who reads my blog. But that our love has grown even deeper in the midst of this storm is a blessing that I never saw coming! I love how she has made me stronger, how she has encouraged me in my low times, and how her fervent prayers have reminded me that “greater is he that is in me than the one who is is in the world.”

Men between 40-50 years old, if you get nothing else from this, please understand how important it is to have yearly physicals and have blood drawn for PSA level. It could save your life. Remember, your family needs you. Therefore, show them your love by taking care of yourself.