He finished up with the ultra sound and said those dreaded words, “turn around and bend over the table.” Well I had that done a few times in my life, in fact the day before with my primary doctor, so I began the process of opening my mind to let it all hang out to get the details. He was happy. He said “that feels pretty good, I looked at him, and he qualified that he was talking about my prostate. He explained to me that a digital examination allowed the doctor to feel the rear of the prostate through the bowel. He mentioned that a large percentage of cancer tumors start in that area. My prostate was super smooth with no tumors felt.
To lighten things up he asked what I thought it meant when a doctor would use two fingers to feel for prostate tumors. I said I didn’t know and his answer back to me was “It’s for a second opinion”. Right then I new I was going to like this guy. Well we weren’t done yet, not by a long shot.
The Tool
There are 3 types of prostate biopsies,
- Transrectal
- Transurethral
- Transperineal.
The transrectal prostate biopsy is guided by the transrectal ultra sound TRUS through the anus and into the rectum. The transrectal and transperineal prostate biopsies both use spring loaded needles to collect their samples as quickly, efficiently and painlessly as possible. The biopsy GUN can collect between 6 and 13 samples depending on the doctor, lucky me, he decided on 12.
Right after being digitized he asked me to lie on my left side on the table. I asked what the next thing was and he said it was time to take samples. He was going to do a biopsy. He showed me a pretty neat looking contraption that looked like a huge syringe, but was made of metal and was about a foot long and unfortunately pretty wide. He was going to put that unit in my anus and up my rectum. Using the ultra sound he was going to position it right against my prostate with just the wall of my rectum between. He had a monitor set up so I could watch. It was interesting. The unit had the spring loaded needles which were sprung at high speed directly into my prostate. As it automatically retracted it brought with it a piece of my prostate. It was similar to using a potato gun loading it up and taking a piece of the potato. Well he did it and was done, or so I thought.
It turns out he had to take 12 samples. Six samples from the left side and six from the right side of my prostate. The samples were taken and after getting dressed, he explained that the samples would go to the lab and be tested for cancer cells. The process was quick and it did not exactly hurt, but I was uncomfortable when the needles thumped into my prostate. Later that day I was fine and I can say don't plan much but don't worry about it either.
He thought at that moment that I had a 40 percent change of having some level of cancer.
Now, one thing they mentioned is that I might bleed a little. This was an understatement. I bled every time I urinated or had a bowel movement for over a week. In fact, you can expect to even throw out some clotted blood, which is a very strange feeling.
After waiting for several days we got the results. I had cancer! In looking at the samples they concluded that 30% of the cells sampled on the left side were cancer and the right side had a lot of pre-cancer cells.
My life changed at that moment. I was one of those people who had to go through treatment to try and get rid of cancer. My mind was in turmoil and I was angry as well as in kind of shock.
My wife and I talked a lot that night about it and I broke down. It’s been a while since I last cried but it was good for me. I accepted the fact that I had the disease and the next day I did the first thing the doctor told me not to do. I Googled. In several hours I was overdosed with data, some wrong, some old, some that did not pertain to me, but all rotten. He had told me that would happen and it did. My suggestion, let the doctor tell you what is going on and feed you information that you need to know. That first Google fest took me over a week to get over.
So I have cancer, my next problem, who do I tell. How do I do it? When do I do it? I really had to think about that. I figured out who I felt should know, who I thought I should wait to tell and some I should never tell. Once I had that down I felt a lot better about it and began contacting those I wished to know. Now remember, this is the first couple of days and I had not even started talking about how I was going to get the cancer treated. I would interject now that after I began treatment, I really started bringing it up all the time, especially to men of my age group. This is a curable disease, in a big way if you catch it early. We all need to get our PSA test done yearly over 50.
OK, so now I had to meet with my urologist and with a radiation oncologist. Why, because the urologist was my primary link to the process and was also a surgeon and the oncologist was the one who would handle radiation treatments. Let me note that with prostate cancer, not many men ever have chemotherapy, it does not work well.
Meeting the Docs.
I was with the help of my wife, an RN, and my primary doctor on the fast track. Insurance was contacted, a radiation oncologist was chosen and the samples were sent to another expert for a second opinion. This was all in the first week.
My first chat with my urologist included my wife. I think it is important to have your partner involved so they can also get the knowledge and not just live in the fear of the unknown. We met and he discussed my case. He talked about PSA levels and something called the Gleason Score which I will bring up later. Overall he felt that the level of cancer I had warranted treatment.
The big thing the doctors kept emphasizing was that it was my decision on how to treat. There are quite a few ways to treat and they all have their issues. The most common procedures were surgery, external radiation, internal radiation with seeds (brachytherapy), hormone therapy or watch and wait. He explained in great detail how they worked and the general odds of doing it a particular way.
Watch and wait was, he said, a way chosen often with older patients. Prostate cancer for the most part is a very slow type of cancer. Someone in their 70’s could actually die from something unrelated before the cancer was to a point that it could take them out.
He explained that someone in their 50’s is pretty young and may live long enough to have the prostate cancer become clinical problem. After talking about 5 minutes, I said forget this type of action, I want that cancer gone.
He next spoke about surgically removing the prostate. This is a procedure that has been done for decades and has a high success rate. I ask about the negatives with the surgery and he came up with a few.
- They knock you out, always a risk.
- If they nick your nerves while removing the prostate you could lose your ability to have an erection.
- You have a pretty high possibility of becoming incontinent.
He came up with some percentages; 50% for incontinence and 50% for impotence. I said at that time, “what else you got?”
He then explained that for the last 12 years radiologists have had good luck with placing small bits of metal that are radioactive directly in your prostate. This technique allows for a very specific and controlled area to be hit with high amounts of radiation while other organs are not radiated. He also said that it had about a 10-20% chance of erectile dysfunction and almost zero risk for becoming incontinent. This was more interesting to me.
Next was external radiation. The goal of treatment is to irradiate a targeted area with as much energy as possible while avoiding the neighboring organs. Intensity modulated radiation therapy (IMRT) and 3 dimensional conformal radiation therapy (3D-CRT) are the newest versions of radiotherapy also known as radiation therapy.
That meant that they would map out your prostate and where it is in your body. They then have you come daily and give you short blasts of radiation from different angles in a CRT machine that you lie in and it turns around you. One thing about this is that if you go that route, they give you three tattoos. They give you one above your pelvis and one on each side to indicate where the CRT machine will take its mark, when you are adjusted before the treatment. The odds for ED and incontinent problems were about the same as the internal procedure.
Next was explaining that they can give you a shot, Lupron, which stops the production of testosterone in your prostate. This starts to weaken the cancer cells and also shrinks the prostate by about 1/3. That’s good because you now have a smaller area in your body to radiate. I have to admit that for the first month or so I thought they had given me female hormones to reduce my male testosterone, I was joking a lot about going shoe shopping and listening to Barry Manilow.
Wrong. Actually, they gave me Lupron, which is the same drug they give in Poland now to all prisoners leaving prison that had a sex related conviction. It takes away your male libido. This drug is also used for women to stop the production of estrogen. It works. I had the Lupron shot and within about two weeks I had no interest in Sex at all. And it was OK. In my case, I will have two shots and that will keep me out of the game for over 10 months. But it’s worth it to me. It is something to think about however, I had no idea what the side effects would be.
OK, what are the other side effects from the Lupron shot? Well, I now have Man Flashes, which are actually hot flashes. If a man has no testosterone, he will have the hot flashes that women have in menopause when they have little or no estrogen.
The doctor, my wife, and I talked for about an hour about all the choices. It came down to a question of what I wanted. Well, I scratched the operation right away as he felt with my level of cancer the odds of recovery were the same as with the radiation. I was thinking radiation now. We started talking about the internal radiation, I asked how that would take place, he said the radiologist would explain that in more detail, but it had good odds.
External radiation also had good odds. I asked the question “If they both work well, what about doing both” I was told that does happen and is a choice, I liked that. I asked what else I could do. He said the hormone therapy could be done as well. I asked if that increased my odds and he said they really did not know yet, but felt it would be a benefit. So it turned out, as I have mentioned, that I picked internal, external and Hormone Therapy. I wanted to knock the heck out of the cancer.
Next step, meet with the radiologist.
Meeting with the radiologist was an important event. What we needed to do was see how he was going to treat my cancer. We met and discussed my decision to have radiation. He explained that if I were to choose to have both the “seeding” brachytherapy, and the external radiation, that he would basically have to design my treatment. I felt good about having both therapies as the doctor told me that by doing both styles of treatment, I would be given a smaller dose of radiation at any one time.
He used the ultra sound to take a picture of my prostate. He uploaded it into his computer program and was going to plan with a 3D image what he was going to do with the implants. We were discussing the implants and I mentioned that I had read on the John Hopkins website that they tried to stay 0.7 centimeters from the urethra with any seeds. He said that technology was several years old and explained that he measured the distances and used different radioactive loads in the seeds depending on where they were going to be placed. It turned out that he was going to put 42 seeds in my prostate. This was due to the size and condition of my prostate and the Gleason score I had, which was 3 and 4, totaling 7. It is important to know about the Gleason Scale because it is an indicator of the level of Cancer you have.
Grades and scores
The pathologist assigns a grade to the most common tumor pattern, and a second grade to the next most common tumor pattern. The two grades are added together to get a Gleason score. For example, if the most common tumor pattern was grade 3, and the next most common tumor pattern was grade 4, the Gleason score would be 3+4 = 7. The Gleason grade is also known as the Gleason pattern, and the Gleason score is also known as the Gleason sum. The Gleason grade ranges from 1 to 5, with 5 having the worst prognosis. The Gleason score ranges from 2 to 10, with 10 having the worst prognosis. It should be noted that for a Gleason score 7, a Gleason 4+3 is a more aggressive cancer than a Gleason 3+4. Also, there is no really difference between the aggressiveness of a Gleason score 9 or 10 tumor.
Gleason patterns 1 through 5 are associated with the following features:
- Pattern 1 - The cancerous prostate closely resembles normal prostate tissue. The glands are small, well-formed, and closely packed.
- Pattern 2 - The tissue still has well-formed glands, but they are larger and have more tissue between them.
- Pattern 3 - The tissue still has recognizable glands, but the cells are darker. At high magnification, some of these cells have left the glands and are beginning to invade the surrounding tissue.
- Pattern 4 - The tissue has few recognizable glands. Many cells are invading the surrounding tissue
- Pattern 5 - The tissue does not have recognizable glands. There are often just sheets of cells throughout the surrounding tissue.
Primary, secondary, and tertiary
A pathologist examines the biopsy specimen and attempts to give a score to the two patterns.
- First called the primary grade, represents the majority of tumor (has to be greater than 50% of the total pattern seen).
- Second - a secondary grade - relates to the minority of the tumor (has to be less than 50%, but at least 5%, of the pattern of the total cancer observed).
These scores are then added to obtain the final Gleason score. Increasingly, pathologists provide details of the "tertiary" component. This is where there is a small component of a third (generally more aggressive) pattern. So there could be a Gleason 3+4 with a tertiary component of pattern 5 - this would be considered to be more aggressive than a prostate cancer that was Gleason 3+4 with no tertiary pattern 5. Although it is debatable as to what the full extent the tertiary component has on the aggressiveness of a cancer.” Source - Wikipedia.
I was ready to get the seeds whenever I could. The doc said that I would wait about 1-2 months after my Lupron shot so that the prostate would shrink. In fact, it shrank over 30%, which gave him a much smaller target to deal with. That was a good thing. Lupron is a nasty drug with lots of side effects, but it is effective in arresting some spread of prostate cancer cells. The two shots of the 3 month 22.5 mg drug did the job of reducing the size of my prostate before my brachytherapy. The side effects for me are worth it, but a real pain. I have had as many as 20 hot flashes in one day (right after my second shot). I averaged 16 and it is now down to 8 a day (3 Months after my second shot). I have adult onset diabetes and had large swings in my blood sugar. I was given a second drug Glipizid which has stabilized that. My cholesterol level has risen and I have had a lot of joint and muscle pain mainly in my legs. When you first get the shot, it really ramps up the testosterone level. which you do not want. So, the Doc gave me pills for the first week that negated that testosterone load.
Lupron is a man-made form from a hormone that regulates many processes in the body. Leuprolide over stimulates the body's own production of certain hormones, which causes that production to shut down temporarily. It reduces the amount of testosterone in men or estrogen in women.
Seeding day. (brachytherapy)
Now that the Lupron had done its job, it was time to do the brachytherapy or seeding.
The plans had been laid and the doc knew exactly where he wanted to place the 42 seeds in my prostate. The process was pretty fast. I went to an out patient clinic, which was pretty funny because it was in the same building and room that I had been audited by the IRS twenty four years before (karma). I met with the doctor and his team. They prepped me and then put me under. While under, the doctor inserted some 20 needles into my peritoneum between my anus and scrotum. They all went into different areas of my prostate. As he removed the needles, he places the seeds. They look very much like mechanical pencil lead. I was awake and on my way home in under an hour with no ill effects. Funny questions come up after the procedure. I was interested in what they did with my scrotum sack while doing the procedure as it would have been hanging around in the wrong place. My Doc said 10 years ago they would have stitched it to my leg, ohhh, but now he drapes it with a wet towel and lays it out of the way with the weight of the towel keeping it from flopping around. Women may find this a funny question, but I think it’s a good tidbit for a guy to know.
The next morning I urinated and saw that I had passed one of the seeds, I mentioned this to the doc and he asked what I did with it. I said that I did not want to pick it up as it was radioactive and just flushed it. He said, right answer.
Now it was a waiting game. I had to give the seeds time to do their thing. They were radiating my prostate from the inside out, which was great because it did not affect any other parts of my body. I had to wait for about 5 weeks before I could begin my course of external radiation.
Let’s talk about the side effects I was beginning to have.
Because I had the Lupron shot, which stopped the production of my testosterone (male hormone), in about 2 weeks my libido crashed. I just was not into sex at all. My hair started to get a lot less oily and my beard slowed in growth and got softer. All that was pretty minor compared to the MAN Flashes.
Because the Lupron stops all Testosterone production the same thing happens to a man that the lack of estrogen does to a woman, Hot Flashes. They started at about the 4th week. I had a couple a day and then it increased to as high as 20 a day. Not fun. I now have a lot of empathy for women with hot flashes because they are not just a flush like taking niacin. Hot (Man) flashes really suck. At first I thought they were just a pain in the butt, but as they got stronger they did affect my daily living. I found that every time I tried to do anything involving exercise, I would have a hot flash. These hot flashes started in my gut with a very uneasy feeling, I began to taste metal and then they would take over my upper body and I would usually begin sweating like I have never done before. While hiking one day, I did 4 miles and had to drink 64 oz of water to keep the sweat from sucking me dry. The big deal about the hot flashes is that they just take all your energy away and you have to take a brake and recover. I do not like them.
Several other symptoms started happening in the second week. The first week after seeding was great, zero issues, on the second week I would get a constant urge to urinate and for a lot of the day the head of my penis felt like it would not be able to hold back the pressure. It did and it will, but the feeling was weird. Week four and five were pretty good and then it was time for the external radiation.
The Hospital (Radiology)
OK, it was now time to do the external radiation. The shots and the seeding had been easy with minimal side effects, even though they were a total pain, and I was ready to move on to my third type of treatment to get rid of my cancer before it had a chance to spread to all those organs and bones so close to my prostate.
I went to the hospital and signed in. I was going to be going there for over a month. Twenty eight visits were in my radiologists plan for me. I met with the lab people that would be working with me every day. They were wonderful and explained quite a lot about what was going to happen.
They first introduced me to the CRT machine. Now this is a big hunking machine that has the radioactivity that they were going to beam into me. They asked me to lie down on the table and then the unit came forward. It was like a big open C that surrounded my body. It had an “eye” that would be shooting out the radiation. Remember that the radiologist and his team have mapped the best routes for it to enter my body to do as little damage as it could while radiating my prostate.
The first time was a little weird. They asked me to pull down my pants to below crotch level and then as you lay down they drape a towel over your privates. Let me tell you after 28 visits you could care less if your techs saw your privates or not, they were curing you and you just wanted to get those clothes out of the way.
Anyway, they have you lying in the unit and they line you up for your treatment with the three tattoos that had been given to you earlier. After about five visits you can scoot yourself to a point that they barely have to move you at all. You see, they have lasers shining right up the middle of you from head to foot and you can see them in the unit’s glass above your head and kind of adjust before the techs do. It became a game to see how little they had to work to get me ready.
OK, you’re set up perfectly in the unit and they are ready. The first thing they do at the beginning of each week is to take pictures prior to starting. We all had to smile, no that’s not true they just took pictures of my prostate. After the prostate was shot for the images, it was time to give it a load of radiation and the fun began. The whole process is very fast. In my case, they had figured out five directions to radiate me. Right side, Left side, 45 degrees upper right and upper left and middle directly under me.
Each of the blasts was for 30 seconds. So I had external radiation for a grand total of two and a half minutes per visit. OK day one is over and 27 to go. The process over the 28 visits really went very fast, and during that time I had no side effects at all except for the chemically induced Man flashes and some muscle pain.
After the Radiation Treatment
Week Two: my main side effects at this time are being generally tired and still having the man flashes. Both are a drag, but I feel good about completing the process. Two more weeks and I will see what my PSA count is by a blood test.
Week Three: after the completion of the external radiation and I still have the other side effects plus I am now noticing that my bowels are once again a little unpredictable.
Week Four: my symptoms except for the man flashes and muscle pain are gone and I have given up the blood for my PSA test.
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