Remember, no two cancers are alike. You cannot and should not compare yourself to anyone else. My cancer and its behavior has proven to be an outlier.
In other words, I’m not normal. Shocking huh?
I’m going to share my medical journey in some detail so you may want to skip ahead unless you have a ding-dong or you love someone with a ding-dong, in which case, this information could save your life.
If you don’t read anything else, read this:
Within a 12 month span, I went from a reasonably healthy 56-year-old man to a stage IV cancer patient- despite having regular physical exams.
Stage IV is end stage.
Three years later, as I approach my 60th birthday, I am on the back side of the stage IV spectrum and headed in the wrong direction. My options are limited and, quite frankly, not very attractive.
There are two tools generally employed with respect to prostate health, digital exams and PSA screens.
In case you don’t know, a digital rectal exam is not an on-line exam, it is a finger (digit) up the butt- live and in person. If you think it’s humbling, and it is, you won’t get much sympathy from the women in your life, or any woman anywhere for that matter. They regularly endure more invasive exams of their private parts.
The exam takes more than a few seconds and, if there is any upside, it is that a thorough exam hits a few areas that are, um, stimulating. In fact, I have a recurring nightmare where the person conducting the exam pushes a little too hard in the “right” spot and then I hear the hospital PA system blasting “clean-up in exam room 6, 2nd floor- patient name is Poindexter”.
There is a lot of discussion in the medical community about eliminating the “finger wave” because a significant number of men are reluctant to get regular physical exams because of it- they find it embarrassing/humiliating.
And if you fall into this group, and if I call you a “pussy”, it is because I love you and I mean it. And you had better pay attention to my story.
To compound matters, there is discussion about the effectiveness and necessity of PSA screening. The argument for not screening is based on the opinion/argument that prostate cancer, in most men, is diagnosed at an advanced age and is so slow growing that men generally outlive the cancer. In addition, some will argue the costs of screening outweigh the benefits. Sounds great until someone like me rolls up- 56 years old with aggressive prostate cancer.
The PSA screen can be performed as part of a routine blood test. I mean WTF? Sounds like a no-brainer to me.
My cancer was not discovered by rectal exam. My prostate was “unremarkable” to the touch, smooth but firm. In fact, the “normalcy” to touch was confirmed by the next 5,692 fingers up my butt in the diagnostic and early treatment stages. I think everyone at Memorial Sloan Kettering in NYC took their shot and they may even have recruited some street people to join in to pump their numbers up.
Every time I hear the snap of a rubber glove, I am conditioned to drop my pants and rest my elbows on the nearest available horizontal surface. It can be embarrassing if you are not in a treatment room and you are shopping in Walmart…..
My cancer was discovered because of a PSA screen. I had a small rise in value over the previous screen but it was not dramatic. Only an abundance of caution on the part of my physician sent me to the urologist.
After finger-up-the-butt check number 2 (of 5,692) in 2015, I was told that everything felt “unremarkable”. Firm but smooth with no ridges or nodules on the top or along the sides.
No wonder it seemed like he was camping up there…
However, he told me the only way to be certain there was no cancer, was to do a biopsy.
At the biopsy, the doc explained that he was placing a probe in my rectum to get his bearings and locate the areas to be biopsied.
I suggested “google maps” instead but it was his rodeo and he was roping his own steer.
The probe looks like a space ship tethered to a mother ship and is shaped like an old school “neck massager” as advertised in women’s magazines. Air pressure is involved.
There are three people in the room- you, the doc and a technician.
You lie on your side, they give you a pillow for your head and knees, they instruct you to face the wall and hang on for dear life. Not really, but close enough.
The doc wears a face mask and a smock to avoid any blow-back. The technician is as a far away from the whole mess as she can get and still do her job.
On a side note, since I was looking so spiffy in my gown with my ass hanging out, I decided to flirt with the tech. I asked her if prostate biopsies were all she did all day or maybe I asked if they were “her jam”- I can’t remember.
Anyway, she replied that it varied day to day- she did testicular sonograms too.
Geez…buttholes and balls, what a swell job- but not my kind of girl.
Note: A testicular sonogram involves reaching up under your gown and applying a warm gel to your scrotum. Okay, so far so good.
Next, she presses a small tool, called a wand, that resembles a cattle prod against your scrotum and moves it all around. Again, not entirely repulsive.
Then she tells you that “you may feel pressure”…. which means you will feel pressure.
No thanks I’m good.
The prostate biopsy does not hurt, the sounds are unpleasant and, by the way, it just might save your life by catching cancer early.
A prostate biopsy yields twelve tissue samples which are individually examined, graded and scored on something called the Gleason scale. The Gleason scale is 1 to 10. The single unit value of each Gleason score is actually the sum of two numbers. A combined Gleason score of less than 6 means your cancer is less aggressive and likely to grow slowly, while a combined score of 6 or 7 means it is likely to grow but may not spread quickly. A score of 8-10 indicates aggressive cancer. It is important to know that the first number assigned is the grade that is most common in the tumor. Therefore, a combined Gleason score of 4+3 indicates a more aggressive cancer than a score of 3+4.
In all cases, 1 is Bueno, 10 is No Bueno.
In my case, I had eleven 8’s (all 4+4) and one 7 (4+3) indicating aggressive high-grade cancer thru the whole gland. No Bueno.
Because of my biopsy results, I was sent for a bone scan and a CT scan to determine if the cancer had spread outside of the gland.
Encapsulated (contained) is Bueno, spread (metastasis) is No Bueno.
My bone scan was clear, my CT showed three “suspicious” lymph nodes in my abdomen. No Bueno.
Suspicion is not certainty. When my treatment recommendations were delivered locally, I learned that the recommended protocol was based, in large part, on the assumption that the suspicious lymph nodes were malignant.
I was being told that I was a stage IV cancer patient with regional metastatic (spread) disease- all based on an assumption. I told the head doc that I would get back in touch with the team. I hope they aren’t still waiting.
At the insistence of my good friend and his business associate (also a friend), I sought a second opinion at Memorial Sloan Kettering Cancer Center in NYC. MSKCC is one of, if not the, leading cancer centers in the world. They do research and they treat patients.
I liked them immediately because they set about confirming the “assumptions” before recommending a course of treatment.
Confirmation entailed robotic surgery to remove the suspect lymph nodes plus the surrounding nodes for examination (biopsy).
Robotic surgery in minimally invasive and utilizes a Da Vinci machine which translates the surgeon’s hand movements into smaller, precise movements of tiny instruments inside your body. The machine is fascinating. Just for fun, watch a youtube video of a surgeon at work with one of these machines- it looks like a pianist or video gamer having a seizure.
Son of a bitch if the local docs weren’t correct in their assumptions- 3 of 17 nodes were malignant. Still, I would do the same things all over again. If I had remained locally for treatment, I am convinced that I would already be dead or close to it.
I’ll try and speed this up now by reiterating that no two cancers are alike. You cannot and should not compare yourself to anyone else- this is especially true for treatment options.
There are several options ranging from doing nothing to complete prostate gland removal. The treatment protocol is determined by the relative aggressiveness of the cancer (Gleason scores), your age, and whether or not the cancer has metastasized (spread) outside of the gland.
I am not the poster child for prostate cancer behavior so I am sharing for information purposes only.
There are a combination of factors, especially if metastatic disease is present, where you are immediately started on Androgen Deprivation Therapy (ADT)- commonly called hormone therapy. With ADT, drugs are used to lower testosterone which starves the cancer of its fuel and puts it to sleep. Fun fact, the body eventually builds up resistance to ADT and the cancer growth starts up again- unless you can find a way to kill it.
Depressed testosterone levels? See ya later libido- nice knowing you!
I have undergone brachytherapy or surgical implantation of radioactive “seeds” (about 67 if I remember correctly) into my prostate followed by 5 weeks of daily external radiation to the prostate and malignant lymph nodes sites in hopes of killing all of the cancer cells.
Unfortunately, the radiation didn’t kill them all.
The first recurrence was 5 months after completing the long course of daily external radiation. It was a small spot, referred to as a “met”, which is a tumor. That “met” was in my hip bone and was zapped with high dose radiation.
Two months later more “mets” appeared.
Today, 8 months later, I have “mets” in my skull, hip, pelvis and suspicious spots in several vertebrae and ribs.
I am about to start a second “new” drug (I had severe side effects from the preferred “new” drug and had to discontinue it). The challenge with these drugs is that they eventually stop working or they never work at all. Regardless of which drug is recommended, it is used in conjunction with standard ADT drugs to suppress testosterone levels to hopefully slow the cancer growth.
Next stop is chemo. Again, a tool used to slow cancer growth.
After chemo comes a serious game of whack-a-mole when the tumors are large enough to push on nerves or organs or both- the purpose is to keep you as “comfortable” as possible; it’s called palliative care.
How long you survive in palliative care is a crap shoot.
I am currently in limbo awaiting insurance approval for the medication not to mention whether or not it will work for me.
I am not a fatalist, I am a realist and my coping mechanism is getting my life in order and living it to its fullest potential.
Whew! I am done with the minutia.
If you have a question, shoot me a message- I’ll try and answer.