Before I begin this blog, I just want to give one more disclaimer. This post is how I made my choice in determining a treatment plan. Prostate cancer is not a one fits all. I urge you, do your research, talk to your doctor or doctors and then make your decision and develop your plan. Don’t take the advice from a stranger with a blog especially when he’s normally a travel blogger who admittedly gives out information that is only 4% accurate and in the case of this blog it drops to 3% accurate. Please go see your doctor.
Hello and Welcome to the Blog. You have cancer. Nothing prepares you for that moment. You are crushed. I heard the doctor talking in the background and I stopped and asked him to repeat what he had just said. He was talking about the biopsy and cancer was found in more than half of samples. Ugh…that’s not good then he talked about my Gleason Score.
I had a guy named Gleason that worked for he me, he thought I didn’t like him very much. He was wrong, actually he amused me very much but I like to joke around with him playing on his misconceptions. So yes, I joked this was one more reason not to like Gleason.
Before I go any further we need to have a serious Chalk Talk….What is a Gleason Score?
This is from the American cancer Society…. What do the numbers in the Gleason score mean, for example 3+4=7 or 3+3=6?
Pathologists grade prostate cancers using numbers from 1 to 5 based on how much the cells in the cancerous tissue look like normal prostate tissue under the microscope. This is called the Gleason system. Grades 1 and 2 are not often used for biopsies − most biopsy samples are grade 3 or higher.
If the cancerous tissue looks much like normal prostate tissue, a grade of 1 is assigned.
If the cancer cells and their growth patterns look very abnormal, a grade of 5 is assigned.
Grades 2 through 4 have features in between these extremes.
Since prostate cancers often have areas with different grades, a grade is assigned to the 2 areas that make up most of the cancer. These 2 grades are added to yield the Gleason score (also called the Gleason sum). The highest a Gleason score can be is 10.
The first number assigned is the grade that is most common in the tumor. For example, if the Gleason score is written as 3+4=7, it means most of the tumor is grade 3 and less is grade 4, and they are added for a Gleason score of 7. Other ways that this Gleason score may be listed in your report are Gleason 7/10, Gleason 7 (3+4), or combined Gleason grade of 7.
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 2 areas that make up most of the cancer, there are some exceptions when a core sample has either a lot of high-grade cancer or there are 3 grades including high-grade cancer. In these cases, the way the Gleason score is determined is modified to reflect the aggressive nature of the cancer.
The higher the Gleason score, the more likely it is that your cancer will grow and spread quickly.
Cancers with Gleason scores of 8 to 10 may be called poorly differentiated or high-grade. These cancers are likely to grow and spread more quickly, although a cancer with a Gleason score of 9-10 is twice as likely to grow and spread quickly as a cancer with a Gleason score of 8.
My Gleason Score was an 8.
Now you would have thought by this time I’d be much more versed in prostate cancer and treatments than I was. I wasn’t. I honestly thought I had an enlarged prostate and that was it. I was dumbstruck….you have cancer. This SUCKS!
I made a follow-up appointment with the doctor to discuss options but in between I had to make a business trip to Cleveland and I had to leave early the next morning. Talk about going from bad to worse, right. I’m kidding I like Cleveland, it’s a neat town. I love the Rock and Roll Hall of Fame, one of my favorite museums to wander though on my own. Being a diehard Cubs fan I’m especially fond of the 2016 Cleveland Indians! How about a little Go Cubs Go for you Cleveland listeners. Sorry that was a cheap shot.
Anyway…this is where I found out that not only does cancer suck but your own worst enemy on this can be inside your own head. You can go to some pretty dark places in a hurry. People around you don’t understand that. No one knows how you feel. Not your doctor, not the nurses, not your spouse, partner, family or friends. No one knows your personal battle, especially if you try to keep it all in. Doctor Google can and cannot be your friend in this battle. More often it’s not. It can be helpful doing research but watch out for people with opinions trying to pass them off as medical experts. I tell you right upfront I’m not a doctor, no miracle cures or elixirs here, no memberships. I just want you to go see your doctor.
Back to the story. Telling my wife was hard. Of course there were tears but I’m a pretty stubborn German guy, I’m telling everyone I’m not going down without a fight. Inside, yeah I was concerned. We decided not to tell the kids until we had some type of plan, no sense worry them at the moment.
Of course there’s no sleep. All the thoughts go through your head. Is this how it ends? Was I a good husband and father? Is the family set up for life without me? What lies ahead as far as treatments? If I survive whatever the surgery or treatments have in store what is life like on the other side? I’m Catholic, I need to get to confession, there’s a lot there to get off my chest.
Morning comes, most people in this condition are plowing through Dr. Google as soon as they get up. Me oh no, I have six hours of alone time driving to Cleveland. Six more hours of thinking the darkest of thoughts. Is the Monster on the loose inside my body? If my wife remarries after I’m dead there damn well had better be a prenup. I’ve saved my whole life for retirement and no slick talking retiree with no money is going to come swooping in and live fat and happy on my work. No way Jack. If that happens I swear to god I’m coming back and I won’t be the friendly ghost.
Sorry about that…..I get to do my Dr. Google research alone in a hotel room in Cleveland for two nights until I need to drive home again.
A week before I got the bad news was Fathers Day. We saw the kids and enjoyed the day and that night I sat down to watch the baseball game. Fathers Day in MLB has all the players in the powder blue hats to show support for men’s health and prostate cancer Similar to where they wear pink on Mothers Day for Breast cancer Awareness. During that game they interviewed Joe Torre and he talked about his battle with prostate cancer. I went on Dr. Google and read his story and that is how I found my way back to the Prostate Cancer Foundation otherwise known as PCF.org. There is tons of information on that site. I recommend it to everyone and I encourage all of you to either download or order the PCF Patient Guide. This was extremely helpful in choosing my form of treatment. Links to this site and the guide are on the show notes and on my website prostatecancersucks.com
The one thing about prostate cancer is you don’t have to rush, it’s slow moving so you do have time to weigh your treatment options. The one thing I found interesting is treatment is not a one size fits all. This is where I followed their advice to talk to different types of doctors and their treatments. I chose to talk to my Urologist, A Radiation Oncologist, A Medical Oncologist and my Personal Physician and after all of those meetings I’d make my decision. What I did find helpful in the PCF Patient guide was #1 a list of questions to ask these doctors and #2 the recommendation to not go alone. Make sure to take someone with you to make sure you’re hearing everything correctly.
So hear we go, starting with Dr. D my Urologist, the treatment recommended was to do the robot assisted surgery and remove the prostate. We discussed all the other options such as radioactive seeds and such but they really didn’t work for my situation. I asked my questions and diligently wrote down all the answers and as he walked me through the surgery he started giving me all the scenarios for things that can possibly go wrong. “This could happen and you could die, This could happen and you could die… This could happen and you could die, you could die, you could die, you could die. Holy shit. This sounded like the worst drug commercial disclaimer I’ve ever heard. Still, You could die from this. Why the hell would I choose surgery. If I do nothing I could maybe live another 10 years but if I have surgery I could be dead in a few weeks. My wife and I walked out dumbstruck…now what? Surgery sounds like a terrible option.
Next up was Dr. C my Radiation Oncologist. Again, I walked in with my list of questions and he described radiation treatments as painless roughly 40 treatments. Prognosis would be good but there are side effects from radiation that need to be weighed. Possible erection issues, urine leakage, stuff like that. Plus radiation can cause other cancers. Crap, not as clear cut a choice as I had thought.
Not unexpected to me was Dr. D my urologist who does the surgery recommends surgery, and Dr C who does the radiation recommends radiation. This is why now we’re going to Dr. S the Medical Oncologist. He has no skin in the game at this point, I’m just seeking his advice. What Dr. S told me made sense, If I’m in your shoes and I’m 57 years old I want the cancer out of my body first. Then if needed I reserve radiation as my second option to combat the cancer if it’s outside of the prostate. Ok, that makes sense, what about all the dying with surgery. I told him that story about Dr. D and he assured me maybe something was lost in translation, plus Doctors have to disclose all that can go wrong during a procedure. He urged me to schedule another visit with Dr. D for more discussion.
Lastly, I went back to Dr. B my primary doctor for the same discussion and he echoed what Dr. S said, get the cancer out then treat with radiation if needed.
Ok….back to Dr. D. I told him of all of my concerns from out last visit and I asked him…can I blow all my 401K money now or do I need to keep saving? He sat there dumbfounded for a minute…no you need to keep saving. I asked him honestly how many people die from this surgery? In his career only one but there was an underlying health issue that caused it.
Ok then. Surgery it is. God help me I have a bunch of loose ends to tie up if things go sideways.
Next time on Prostate Cancer Sucks but there is Always Hope…..Team Chuck, American Pie and F-Me.
Prostate Cancer Sucks 