Prostate Cancer, my journey.

124grovest

New member

Hey brothers, the reason I am sharing the following will become evident. The moral of my story parallels a reoccurring theme that I have observed over and over on MG, so much so, I felt compelled to write the following.

Statistics indicate that if you live in the USA, Canada or the UK and make it to 80 years old, you have an 80% chance of developing Prostate Cancer. You will either develop it or will know someone who does, the numbers are staggering. It is the #2 or #3 killer of men in the USA. The “good” thing about Prostate Cancer is that it grows slowly and the average age of detection is around 68 or so. It is so slowly developing that many men choose to opt for Active Monitoring of the disease instead of treatment, when detected early. Studies from Europe seem to suggest a lifetime of processed dairy consumption is to blame, but with so much at stake, who knows what to believe.

In May 2016, I had been on TRT for two years and had decided to change clinics. The new doctor decided to start fresh after reviewing my records. He ordered all new labs and found that my PSA had been steadily on the rise for 3 years. A digital exam was performed, followed by a biopsy a couple days later, followed by a few long days of waiting, when finally the call came.

There I was, a few weeks after turning 53, I got the call from the Urologist telling me my biopsy came back positive; I had cancer. Initially, it wasn’t as big a blow to me as it was my wife and kids. My Dad had testicular cancer, my Mom had breast cancer and my Grand-dad died from Prostate Cancer. I kind of figured the odds were against me and I just began to absorb the realization that “someday,” had just arrived. I knew I had a lot to learn.

Into the internet I dove. I was not at all comforted by what I read. The relatively common occurrence of Prostate Cancer had diminished the severity of the disease in my mind. Then it hit me; Holy-Crap, this IS a big deal. I guess I was quietly in denial. My mind was trying not to go into the “Oh F*ck-mode” as reality sunk in. It was at that time an acquaintance said to me, “At least it’s the good cancer.” I know what he was trying convey, but he failed miserably. I poured myself into my research but, the more I read the more questions I developed and the more confused I became.

One thing to remember when researching medical procedures is this: the US medical system / insurance system is designed and operates primarily to make money. It isn’t about quality care, it isn’t patient advocacy, it isn’t for the betterment of humanity; it is to make money, plain and simple. Yes, it is full of well-meaning people who love their fellow man, but the industry is fashioned to make money… and lots of it, lots and lots of money. You are not a person, you are a number.

My wife and I made an appointment at the urology clinic and met with the surgeon and radio-oncologist. They presented two options; surgery or “pencil beam radiation.” This is all they talked about because these options were the only thing they had on their shelf to offer. Remember, it’s about the money.

They told me of the possible side effects ranging from the “rarely occurring,” which included death, to the “usually occurring.” That list was too long to list here but it included a couple that screamed at me; Urinary incontinence and total loss of sexual function. They tried to comfort me by telling me not everyone was left with a bag to pee in and impotence. Their words had little to no comfort.

They asked for questions and I brought up another procedure that I had come across called Proton Beam Therapy (PBT.) It had been developed at the Loma-Linda medical facility in California over 25 years before. Since then there were 25 other proton treatment centers in the US and over 40 worldwide. They had a list of reasons why their offerings were better and warned me against “experimental procedures.” It became clear to me in an instant that because of my research, I knew more about proton therapy then they did. We left disgusted, almost like leaving a car dealer who tried to sell you junk.

We dove back into the internet to research even more. My wife was in nursing school at the time and primed for research. Everything we found about PBT was positive. I began asking around my area for men who had fought Prostate Cancer. What I found was alarming. Everyone I came across who had had radiation and surgery had suffered from incontinence for at least a year and many still had difficulty with stopping the flow completely. One man who had opted for surgery, ignorant of any other options was so depressed because of being forever impotent and incontinent, he was on anti-depressants. He told me that he had contemplated suicide on more than one occasion. Several others revealed they were impotent and incontinent but, were determined to make the best of it. I read in my research that the suicide rate among men who had suffered impotence and incontinence because of surgery or radiation treatment for Prostate Cancer was unbelievable.

I was contacted by a friend-of-a-friend who had heard of my situation. He wanted me to know that he had gone to MD Anderson hospital in Texas in 2007 and had undergone PBT. He said he had absolutely zero side effects, zero discomfort during the treatment and could not stop telling me to NOT have surgery under any situation. He had a list of horror stories that he had come across when he had done his own research. He was nothing short of a PBT evangelist.  My mind was made up, I chose to have Proton Beam Therapy instead of surgery or traditional radiation therapy. 

Oh how I wish my story ended there, but it doesn’t. I work for a state governmental agency, which I had assumed had good insurance; it doesn’t. I was disappointed to learn they viewed PBT as experimental, even though it had been around for over 25 years. Even though it was covered by over 85 other insurance companies in the US and even though it was MY health that was on the line; they didn’t care.

So what was I to do? How much would I need to pay out-of-pocket? Trying to find that out was as difficult as finding the launch codes for the US Missile Defense System. After countless calls to the billing departments in 5 different hospitals over a 3 week span, I was able to estimate the cost of PBT somewhere between $180,000 and $230,000. Hospitals WILL NOT tell you anything close to an estimated cost, they just don’t. It all stems back to why they exist, remember? It is all about money.

I wish I had that kind of money laying around but, I don’t. I looked into cleaning out my retirement, but the rules literally say I would have to sell my home and prove destitution before I could access those funds for an emergency. Selling my home was an option, but I stood to lose tens of thousands of dollars and still not have the full amount. I would have sold it and my car and anything else to avoid peeing in a bag with a forever limp penis. Then I decided to look overseas.

There are over 40 PBT facilities around the world and I came across one in Prague Czech-Republic. The UK National Health Service (NHS) uses the clinic there so I looked further. Their lead oncologist was trained in the UK and Western Europe. Their physicists were trained in the US, Canada and Australia. The proton accelerator was manufactured in Belgium and was the exact same manufacturer that supplied over half of the facilities in the US. I contacted them and sent off my lab work via email. I got a response in less than a week; I was a good candidate for PBT at their facility.

Now for the eye opening, jaw dropping revelation. How much would the procedure cost? It’s almost half way around the world from where I live. I knew I would have to be there for close to a month and that would be an added expense.  However, I couldn’t believe what I read when the email spelled out that the total cost of the procedure would be exactly $25,860 USD. That was for everything, except for food and lodging ($2500.) Needless to say, I went to Prague and had the procedure done.

The only side effect that I experience was a touch of proctitis, which effects less than 2% of all men being treated worldwide with PBT. I didn’t follow their directions regarding diet and it was probably my fault, but it has passed.  I was never incontinent, I have my sexual function still intact. I didn’t wear a catheter for a single second. No incisions so no infections. I am cancer free. It was a prudent decision that I recommend to anyone faced with the same unfortunate situation.

So what is the take away from this post? Quite simply, it is your health. You are ultimately responsible for researching the options, the benefits and the real and potential dangers of any procedure or treatment. We are responsible for thoughtfully considering that information and making decisions based on sound and sensible principles. Like I said at the beginning, a reoccurring theme that I have read and been challenged to consider here on MG.

 

 

siegmund

Moderator

+3 thankyou , 

I always new and know the us is about the almighty dollor. ,im looking for a treatment and maybe its time i start looking in the right places.  Thankyou agion for sharing.    

Sig.  

 

SemperFi

Well-known member

OOH-RAH is all I can say about that survival story!!!! +3


"Knowing yourself is the beginning of all wisdom." -Aristotle 


 


SEMPER FI

 

strong

Member

Wow man, Thank you for taking the time to post this.  I found out the same things you did with our American Dr's.. My issues were not cancer but I couldn't feel my legs and had many problems from multiple serious accidents.. I will say that it came down to me taking my problems into my own hands with help from a very smart brother of mine.. I don't even know you bud but I'm proud to have met you... 

 

Dolf

Moderator

Thanks for sharing your story brother! +3

MD Anderson is by far the best cancer hospital in the world. People come from all corners of the world seeking treatment. I'm lucky enough to live near it. 

 

ESmetalhead

New member

Thanks a lot for sharing this!  I was relived to get to the end and read the nightmare had a good resolution.   My Dad had it as did his Dad so I have had "someday" in my thoughts as well.  Any idea if TRT contributed to it? I was told by and endocrinologist it it will not cause it but it will make the cancer grow faster if you have it.  Its a concern and I will start including PSA on my blood tests.

Speaking of blood test I've come across a do it yourself blood test called Everywell it could be very useful for people in states that cant order there own online.   https://www.everlywell.com/

 

SemperFi

Well-known member

124,

I put PBT in my memory banks. I don't want to distract from your post because your story and the effort you put into the post is appreciated but I wanted to mention there is another highly successful treatment for prostate cancer to put in your hip pocket. I mention it because prostrate cancer is a very common cause of death in aging males....

Hyperthermia and oxygen. Although the post was about metformin I mentioned hyperthermia here... 

https://musclegurus.to/forum/training-nutrition-and-diet/over-40-years/135712-metformin-and-prostate-cancer

 

SEMPER FI

 

RazorsEdge

New member

Thank you for sharing your story. As a medical professional in the US I feel horrible you had to go through that but it doesn't surprise me. Medicine is a business first in the US, actual care comes in second

 

124grovest

New member

Because of your family histor with prostate cancer, you are 6-8 times more likely to get it. Get your PSA checked so you have a benchmark to compare to as you age. And yes, TRT has been shown to accelerate the growth of cancerous cells, hgh has been shown to have the same properties. A high PSA in one test isn’t  at All defintive. PSA is used to track it. Riding a bike and orgasm are just a couple different thing that can temporarily raise your PSA. 

 
S

supps

Guest

Wow, thats a great story man... Goes to show what knowledge does for a person in ANY situation! Do your homework and be informed on all aspects of your health! This is why I always recommend people to get bloods done regularly!

Thanks for that inspirational story Sir !

 
S

supps

Guest

Wow, thats a great story man... Goes to show what knowledge does for a person in ANY situation! Do your homework and be informed on all aspects of your health! This is why I always recommend people to get bloods done regularly!

Thanks for that inspirational story Sir !

 

ESmetalhead

New member

Good to know, unfortunately but I know early detection is paramount,  I had my first PSA a few years ago.  I'll start to include it every time I get a blood test, 6-8 times  more likely I guess its a matter of if not when.  Thanks for bringing up this topic, its something we all should learn about. 

 

SenseiMiagi

New member

Thanks for sharing!  Sad to have to go that route due to the US's failure to give a shit.  Glad you had the drive and patience to look elsewhere.

 

ESmetalhead

New member

Since this thread deals with prostate cancer I thought I would throw in this study that cast at least some of the blame on to estrogen.  Yet another reason to get blood work done and our estradiol dialed in

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134227/

 

wonderpunk24

New member

Thank you, Grovest.

I cant tell you how passionate I am about the themes you mentioned in your post (which was just phenomenally written - you should be an investigative journalist).

When it became necessary for my father to have a hip replacement done, I - being the “techy“ one in the family - dove into the internet. The hip replacements that are routinely performed in the United States are a horror story. If you have one done, you can plan on never skiing again, never hiking moderate distances up into the mountains, never doing a Spartan Race. You become extremely limited, lest you risk cutting the lifespan of your replaces hip in half. Guess what that means? You get to have ANOTHER hip replacement.

But I learned about a procedure called “hip resurfacing.” I won’t go into detail here, but the lifespan of hip resurfacing is basically unknown because the procedure has such incredible longevity, they don’t fail within the patient’s lifetime. But, you guessed it, the procedure is not offered in the United States.

My search took us to Mexico. Mexico? I pictured surgeons wearing street clothes and performing surgeries with a set of butcher tools. I was so wrong. These doctors are trained in top-of-the-line Universities in Europe, Asia, and the United States, and the facilities are cutting edge. They have newer, higher-quality equipment, because it Takes about a decade longer for us to buy and incorporate new equipment into our hospitals and facilities. AND they have an adjoining RESORT for the recovery period. You kick back next to the beach for a few weeks, being served incredible food cooked by an imported chef.

Please do your homework, people. Our healthcare system is broken (and that is not a political statement... I’m talking about the business, research and development aspect). Your quality of life, or life itself, are on the line.

 

wonderpunk24

New member

Thank you, Grovest.

I cant tell you how passionate I am about the themes you mentioned in your post (which was just phenomenally written - you should be an investigative journalist).

When it became necessary for my father to have a hip replacement done, I - being the “techy“ one in the family - dove into the internet. The hip replacements that are routinely performed in the United States are a horror story. If you have one done, you can plan on never skiing again, never hiking moderate distances up into the mountains, never doing a Spartan Race. You become extremely limited, lest you risk cutting the lifespan of your replaces hip in half. Guess what that means? You get to have ANOTHER hip replacement.

But I learned about a procedure called “hip resurfacing.” I won’t go into detail here, but the lifespan of hip resurfacing is basically unknown because the procedure has such incredible longevity, they don’t fail within the patient’s lifetime. But, you guessed it, the procedure is not offered in the United States.

My search took us to Mexico. Mexico? I pictured surgeons wearing street clothes and performing surgeries with a set of butcher tools. I was so wrong. These doctors are trained in top-of-the-line Universities in Europe, Asia, and the United States, and the facilities are cutting edge. They have newer, higher-quality equipment, because it Takes about a decade longer for us to buy and incorporate new equipment into our hospitals and facilities. AND they have an adjoining RESORT for the recovery period. You kick back next to the beach for a few weeks, being served incredible food cooked by an imported chef.

Please do your homework, people. Our healthcare system is broken (and that is not a political statement... I’m talking about the business, research and development aspect). Your quality of life, or life itself, are on the line.

 
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