Searching for Answers; One Man's Prostate Cancer Leads to a Must-Read on What to do If/When it Happens to You

After being diagnosed with prostate cancer six months ago, I asked myself all of the right questions. Will I die, and if so, when? How do I find out what I should do to treat the cancer? How do I take care of my family for when I am not here?

Very early in my research I talked to a doctor friend who had gone through prostate cancer. He spent weeks determining the options and the probabilities. His best words to me were to make my own decisions on this, don’t just take what any one person says as the correct thing to do. Every doctor and patient has their own favorite way to handle prostate cancer, and it may not be the right one for you. Study the statistics.

There are lots of things written about these issues when you have the emotional energy and time to look. I read more than a dozen books, scoured the internet for over 100 hours, and talked to more than three dozen doctors and prostate cancer patients to assist me to make my decisions. As a lawyer, the lessons have been to learn as much as you can before deciding to take action. Each person should do their own research and make their own decisions after consulting with their physicians, family and friends. Not easy to do when your training is other than in medicine. I was concerned about the quality of my life after prostate cancer, knowing that both impotence and incontinence are significant issues with almost all prostate cancer treatments.

The most important questions turned out to be how much cancer is in my body, how aggressive is it, and from these answers, what kind of treatment should I undertake?

Prostate cancer is a statistics game. Most people do not realize this. Each expert or patient will advise you to do what they believe is the best. For doctors, that will be based on their specialty and knowledge. The Urologist will advise to take it out (prostatectomy). The radiologist will advise to do the type of radiation that they know the most about, or practice. Each patient will support the process they used.

Everyone has motives in taking their positions. The prostatectomy is the gold standard for the last twenty-five years and Urologists are surgeons and believe in removing the cancer. Radiation Therapy has made incredible strides in its accuracy and effectiveness in the past few years. And, which one will work for you among these and other options is not simple to figure out.

There are 15 options, that I could find, available today for a person diagnosed with prostate cancer. Every one has its benefits and drawbacks. The earlier on that you detect the cancer, the more options are open to you. Not one of the books that I read talked about all of the options. Rather it was a conglomeration of information, much of it overlapping, but with one or two new facts coming from each reading.

The first thing to do is to put the cancer in perspective. There are two measurements that count. Your Prostate Specific Antigen (PSA) is a measure of cancer activity. The average man has a measure of 2.0 to 4.0. When it goes above 5.0, or if it accelerates (velocity) more than 1.0 in a year, you need to find out more. Mine went from 2.3 to 3.6 to 4.7 over two years. My brother had prostate cancer, and if a sibling or father has it, you are twice as likely to get it.

At some point your Urologist will want to do a biopsy. Not a fun process. They take slivers of your prostate by going in through your anus and sticking needles in. Those samples are then studied for cancer content. Generally they take 10 to 15 samples. For me they took 21, with 4 showing cancer. That is 19% of the samples. For two months I thought I had 19% cancer in my prostate, with the understanding that they may have only found about ½ of the cancer through a biopsy. What I did not know to read in my biopsy report was that in the samples that had cancer, mine had 15% cancer. So 19% X 15% is under 3%. My case was clearly early on.

I found a prostate oncologist. He is not a surgeon, so his thoughts were not prejudice to a prostatectomy. He is not a radiologist, so he did not lean towards radiology. Rather he studies all the options available.

From the biopsy a radiologist subjectively reads the slides and very carefully comes up with a rating on two things, the type of cancer (slow, medium and fast growing) and a score as to how the cells are malformed, the Gleason score. Gleason ranges from 2.0 to 10.0. If you have under a Gleason of 7 , you probably have time to figure out what is going on, unless it is a fast growing cancer. At 7 or higher, you have to start now to figure out your options. Mine was a 6.0. I had a slow growing cancer. And, I found that the probability of a Gleason 6 turning to a Gleason 7, a level which calls for more action, was 8% after 10 years.

My Urologist said, “We can take it out and you won’t have to worry about it any further.” That is his training, and that is what he was taught to say, and it is how he makes his living. Fifty percent of people who are diagnosed with prostate cancer have it removed through surgery.

What I found out from my research is that 10% of all males in the U.S. have prostate cancer at 20 years old. It goes up 10% per decade, so at 60 years old, 50% of all men in the U.S. have prostate cancer. So, when I went in for my biopsy, the chances were much higher than 50% that I would have cancer, in that my brother had prostate cancer at my age.

Lets talk about the 15 options that I found. It is easiest to do it in outline form. The higher your Gleason score, and the more active your cancer, the fewer the options that are available to you.

PROSTATECTOMY: The so-called “gold standard.” It works to remove cancer 98% of the time. The times it does not work is if the cancer has already spread beyond the prostate gland. The surgeons say that surgery is relatively easy, perhaps only one day in the hospital. There are two ways to take it out, and two positions to work from. The two methods are by hand and by robotics. The younger doctors use robotics. The positions are they can take it from the top, or from the bottom. If they take it from the top, they can look at your lymph nodes during surgery to see if there has been a spread of the cancer. The robotic surgery can be done with minimal scars if they take it from the bottom.

Now the reality. There are two sets of nerves surrounding the prostate which are directly linked to the ability to have an erection. The word is that “nerve sparing surgery” is more likely to work using robotics. The Urologists will tell you that the probability of impotence is 30 to 60%. The books and articles I have read on it say it is closer to 80% and assumes you are using Viagra or Cialis. If these pill don’t work the fall back position is to take injections directly into the penis or or have a prosthetic device implanted into the penis. . The probability of incontinence is anywhere from 10 to 20% depending on who you talk to and what you read. Wearing diapers is not something any of us wants to do.

RADIATION THERAPY. There are at least six different ways to have radiation treatment. They are broken into two categories, internal and external. Internal radiation, Brachtherapy, implants irradiated seeds (they look like the tips of needles) into your prostate. They stay there forever and basically fry your prostate, and kill the cancer along with it. The second type of internal radiation places radiated materials into your prostate, at the hospital, for 72 hours, and then it is taken out. Seed implantation has been around since the early 90s and is 95% effective in killing the cancer, essentially as good as the prostatectomy. There are still issues of incontinence (1-3% and impotence (30-40% or more), but the numbers are somewhat better than those of the prostatectomy.

External radiation includes what is called IMRT. You have plus or minus 20 to 50 treatments, once daily during weekdays, where they shoot a radiation beam at your prostate from all angles working to kill the cancer. Radiation has been around for a long time but over the last 5 years they have perfected it to be more accurate and in the right dosages for different levels of prostate cancer. There is potential damage from the radiation to surrounding tissues which the radiologists work to keep to a minimum (severe rectal burns occur in 2-4% of cases).

Proton beam radiation has been around for a long time. The proton gives off radiation at the end of its life (milliseconds) and the beam is shot at the prostate from a distance that has the life terminating in the prostate. The proton radiation centers claim this is the least invasive radiation treatment. However published comparisons of IMRT to proton therapy indicate similar cure rates and possibly slightly higher rectal burn rates with proton therapy.

In further along cancers, there is an option to do both internal and external radiation together, a course that many people take, using IMRT radiation first and then seed implantation.

CHEMOTHERAPY: Cancer growth can be stopped with testosterone blockers. If you need time to think about what you want to do, this is one way to buy time. You also become temporarily impotent. There are a number of other chemical methods in testing right now, some of which have great promise for the future.

OTHER TREATMENTS:

High Intensity Focused Ultrasound (HIFU) is used in Europe and Canada and Mexico, among other places. Two Ultrasound beams are focused at points in your prostate and when they meet they boil the prostate. There are two different techniques used for this treatment, one requires a week in the hospital and the other a three hour treatment. The best I can tell is that this is a hit or miss proposition. If they don’t get to all of the cancer you continue to have great risk. The point of boiling and how far it covers is still in experimentation. With radiation you know that it covers areas around it, because it radiates. This is just boiling, and there is a higher chance that there will be areas not covered.

CRYOABLATION:

Freezing of the prostate to kill the cancer. Most likely you will be impotent after this treatment. They are experimenting with partial cryoablation, which may have better results on potency.

EXPERIMENTAL DRUGS:

There are some very good research projects working to use anti-cancer agents which go directly to the cancer only and destroy their ability to replicate. These are years away from the market at this time.

HOLISTIC:

There is a lot to be said about eating the right foods. The rate of prostate cancer in Asia is 1/18 of that in the U.S. It appears to be primarily diet which feeds the cancer. It may be that by changing your diet that you can slow it down, or even stop it from growing. Some people even believe it can rid you of the cancer. The only time to experiment with diet is when you are very early on in the process, or before you get cancer.

ACTIVE SURVEILLANCE:

Formerly called Watchful Waiting, is a program that has you involved with your doctor in reviewing your situation on a regular basis to see if there is a change in the status of the cancer. This is available if you are early on in your cancer and allows you time to find out more about it and the options available for treatment.

I am doing active surveillance under the guidance of my prostate oncologist. Every three months we take a blood sample to find if my PSA level has moved, and we image my prostate with a special sonagram to see if there is any change in the shape, size or appearance of the outside of my prostate. We took baseline measurements to compare to see if there is any change in the surface of the prostate.

CONCLUSION:

Prostate Cancer is a game of statistics. After fully understanding your condition through evaluation of your PSA, the changes to the PSA, your Gleason score, and where it fits into the overall picture of your prostate cancer, then you can make your own decisions. I did not let any one person, or doctor, tell me what to do, but rather took the time to understand the options and make a knowledgeable decision on my treatment. The impact on the rest of my life, and those around me, is too great to leave up to chance, or a single opinion.

**** About the Author:

Rick Citron is a 63-year old attorney who embarked on his journey of learning everything he could about prostate cancer after being diagnosed with it. At the request of LifeTwo, Citron agreed to share what he learned here so that others could benefit from his research and experience.