This page updated January 24, 2020
Jump to: My Surgery and Side Effects
I urge caution!! Read this site entirely before you accept any form of hasty treatment, especially quick acceptance of ADT which is not reversible, that would have been devastating in my case!!!!
I wish I could put everything that's important at the top of the page, but I can't! ALSO, I update throughout this document as details come to mind, available, and records are reviewed and it is not practical to make notation of where those additions are made.
On July 27th, 2019, I received my diagnosis of prostate cancer. Here is the whole story.
Important things you need to know: What is QALY? I'm to Young to be concerned! No level of Radiation is safe! What is Cancer? Is there better treatment elsewhere? My cancer costs to date. Negotiate your Medical Bill! Sexual Function after surgery. Choosing your Surgeon, a very important decision. These links will jump to that specific information.
KNOW THIS: Prostate cancer is for the rest of your life. There is no effective "Chemotherapy" for prostate cancer. There is no, "After five years you are considered cured", nor any other time passage means you can forget you had it. Once you are diagnosed with prostate cancer you must monitor it for life. It can return at anytime even after your prostate is removed, often 10 years or more. THE GOOD thing is that once successfully treated, it's not very likely that you will die from prostate cancer. Now considering that statement, you might well die from, or experience devasating side effects due to a poor choice of treatment, this is common. You can view the male reproductive system HERE, which I stole from New Health Advisor website.
During my annual physical (2019), my doctor commented that my Testosterone was low, and inquired as to my symptoms e.g. low energy, low libido, poor stamina, etc. I was having all of the symptoms, and had been for a while. She prescribed a daily topical Testoterone treatment at a formulation of 75mg Testosterone, and 50mg DHEA. She also recommended a PSA test including hormones at that time. That PSA test came back at 7.4, which is much higher than my normal 2.x, and even much higher than the concern threshold of 4.0. In the mean time, my low testosterone symptoms slowly faded away, and I even forgot that I had them in the first place.
Considering my high PSA, my doctor prescribed antibiotics in the event that I had a Prostate infection. On May 28th, we took another blood test to see where the PSA was at that time, and it came back at 8.8. My doctor then referred me to a Urologist. Having been previously established at Tennessee Urology Associates, that is where I chose to go, and I am happy that I did as opposed to going to some local minimally experienced Urologist.
July 2nd, 2019
On this date, I had my first visit with my Urologist where he conducted a DRE (Digital Rectal Examination). This is where he pokes a finger up your rectum and massages the prostate. Now I have had a few of these, but I have never had one like I received today. I'm here to tell this ain't no "Road Trip"! It was quite painful, and he commented that he had found a lump in the right side. We talked about my Testosterone treatment which is commonly believed to feed prostate cancer, and cause a high PSA as a result of the now fast growing cancer. I mentioned the idea of going off of testosterone to see what happens, and the doctor commented that he thought I would just be delaying the inevitable, a Biopsy. He did not tell me to go off of testosterone at that time, so I did not. We elected to go ahead with the biopsy because we don't want to delay a possible early cancer diagnosis, so we scheduled the biopsy for July 17th, at which time it was performed.
The DRE: I am convinced that although a General practioner may be capable of finding whether or not you have an enlarged prostate, I don't think they have the experience to find a small tumor. Finding such a tumor takes practice, a lot of practice and specialty knowledge. I firmly believe that you should have your PSA checked at every annual doctor visit after you're 30, and a Urologist DRE every year after you're 40 years old. If you want to be proactive, that's what it is going to take.
July 14th, 2019
I discontinued Testosterone treatment on this date, with the last dose being the night before, (July 13th).
July 17th, 2019
When I was briefed on the biopsy process by my doctor, quite honestly it concerned me a good bit. Also, I had read about it and watched a video or two. There wasn't really any good or detailed information about it though. I had read that the procedure only takes about 10 minutes. I found that time to be a little exaggeratory, maybe wishful thinking. I think I was in that process for about 20 minutes or so, still not bad. The doctor had prescribed hydrocodone with the instruction to take two, one hour before the sceduled procedure. He also prescribed the same drug for use three times daily for the next five-or-so days. I was a little overly concerned about pain as a result. He also prescribed antibiotics that I would begin taking a couple of days before surgery, which I took as directed. Upon showing up for my appointment, I received a shot in the ass of another strong dose of antibiotics (which would turn out to be the most pain in the whole procedure, lasted a couple of weeks). I understood this, afterall they are shooting a needle through the colon wall into the prostate to pull a core sample, and they are going to do this 12 times. Lots of opportunity for infection with 14 holes punched through the colon and into the prostate considering the two with lydocaine.
In the procedure room I was placed on a comfortable table, on my left side with my knees raised slightly, one leg over the other. In this position, the doctor gave me another thorough DRE, no less painful than the last despite having taken the hydrocodone. Then the doctor inserted the ultrasound probe in my rectum to which a needle assembly is mounted to the top for the purpose of the biopsy extraction preceded by an injection of lydocaine in each side of the prostate. The doctor informed me of everything he was going to do so there were no surprises. The injection of lydocaine was nearly painless, though I did feel a very slight pin prick, nothing more. The DRE hurt far more. The nurse informed me that the core gun was going to be kind of loud, kind of like a BB gun going off; it was as described. She advised me to try not to move statng that some people jump a little with the noise. There was no pain in the process of the core extraction, though it was a slow process and loud as I had been warned. I could feel the needle penetrate my prostate, but painlessly. I could feel the doctor load the core gun prior to each extraction, but it was painless.
I had been warned about the possibility of blood in my urine, excrement, and semen for a period of time, 6 weeks or so. I was told to refrain from lifting more than 10 pounds for 5 days, and against having sex for 14 days, though I had read that many recommend as little as 48 hours before sex. The 5 day weight limit wasn't an issue, but the sex hold off was. I had only two instances of a slightly pink coloration in my urine, and I do mean slight. I never saw any sign of rectal bleeding. Now the semen was another story. I think it was day 4, maybe day 5 when we gave it a go. That was very bloody, kind of like sex on the rag, I mean wow! No pain though. We held off another few days and there was nothing but spotting after that. I experienced no pain after the procedure except for a slight discomfort issue during the first night but nothing I would call pain, and I never took any of the Hydrocodone. For what it is worth, I didn't care for the feeling that I got from the Hydrocodone that I took before surgery, so I certainly didn't want to take any if I didn't need it.
July 27th 2019
I was at work this Saturday morning when at about 1030 I got a call from my Urologist at which time he notified me that I had Prostate Cancer. The worst part was that it was an aggressive type which needed prompt addressing. Bad news that I really was not prepared for at the time. I kept quiet about it until my hitch ended so that I could notify my wife before anyone else. The doctor informed me that I would need a CT, and Bone scan to determine if the cancer was contained within the prostate, or if it was outside and had metastisized to my bones or other organs. Now that idea will instill some fear in a person!
Informing my wife and kids
July 30th 2019
As much as I thought about how to prepare for telling Angelica, I knew that what needed to be done was to get it out, and right away. I told Angelica first thing Tuesday morning, July 30th. She didn't take it well at all, about like I did Saturday morning, maybe a little worse. Once she came to terms with it a couple of hours later she began researching information, and Angelica knows how to research! She learned an awful lot; most of what follows.
The same goes for my kids and grandkids. We are a close family, and everyone takes stuff like this serious. There is no easy way to tell the story, nor to take the emotional shock away.
July 31st, 2019
Angelica mentioned how Iodine (which had been prescribed by our doctor) had improved her breast lumps, so I did a little reading about it and learned that the prostate is also another gland that is affected by Iodine deficiency. I immediately began Iodine intake at the rate of 3 drops each morning in about 3 ounces of juice. It could be any volume or type of liquid.
August 5th, 2019
We had a visit with our Primary care Doctor to inform her of my condition, and to discuss her thoughts on treatment options. We also ordered another follow up PSA with a full hormone panel because the urologist had not. It had been 9 days since I had discontinued testosterone treatment, and 5 since since I had begun Iodine, so we wanted to know where my PSA stood now since we had made those several changes as we had become aware of issues that effect PSA testing, and certain types of glands in the body.
Four things that can affect the PSA result
- Testosterone Treatment - There is so much disagreement on this one, actually it is lack of evidence. General practitioners say that it doesn't influence prostate cancer, but Urologist's don't agree. One thing that all doctors do agree on though, is that testosterone will make cancer show up if you have it! They all agree that testosterone will make the tumor grow at an alarming rate. Testosterone is to prostate cancer as sugar is to other cancers; the food that makes it grow.
- Supplemental Biotin - This is usually part of a B12 supplement so you just need to stop that for 3 days prior to testing. B12 is an important supplement, so don't stop it altogether. Must be no intake in preceding 3 days prior to PSA testing to ensure lack of interference. This has nothing to do with the cancer, just an artificially higher PSA result.
- Sexual Activity - Must be NONE within that preceding 48 hours prior to PSA testing. We had never heard this before, but it can also cause an artificially higher result.
- Iodine deficiency - Common cause of problems within specific glands, good idea to take it everyday forever. Most people have a severe deficiency, that is the reason it has long been added to table salt. There are studies which indicate that iodine intake can actually induce apoptosis in breast and prostate cancer cells. More below on my case. For more information and data, visit the following sites: Dr. David Brownstein and TRAMP MM.
August 6th, 2019
I had my CT and Bone scans but was unable to obtain any results immediately. I needed to wait for yet another appointment with my Urologist to be enlightened on those findings. I was able to pick up the results 3 days later.
August 8th, 2019
We went to my Urologist to discuss the results of the CT and Bone scans, and to learn about potential treatments. The doctor informed us that both scans had come back negative; the cancer was believed to be contained within the prostate. With the cancer contained, any of the options below can be chosen, whereas if the cancer were outside of the prostate there are significantly reduced options. We had already studied and read much about the common results and the side effects of each. Having learned what we did, and having talked with my primary doctor about these treatment options, we knew what we were not going to do. The problem with the side effects to the treatments listed below as NOTs are that they often don't show up for five or so years after treatment. That makes them deniable right? Indeed it does, at least to some degree.
By diagnosis through many means, my tumor takes up less than 50% of the right side of my prostate, the left side is clear. So that equates to less than 25% of my total prostate. The tumor appears to be located in the lower outer area. It is clasified as a T2A tumor, it is stage 2 G3, with a Prolaris 3.7 rating, and it is a Gleason 9. The Gleason 9 is the bad part, need to get that aggressive dog out of there!
For what it is worth, they don't remove a part of the prostate like some organs, it's all or nothing.
Possible methods of Treatment
- Active Surveilance - NOT - My cancer is to aggressive for this method. This is where you and the doctors watch your cancer to see if and how fast it grows. This means occasional biopsies which can not occur more than once every 6 weeks because that's how long it takes the prostate to heal from one.
- Androgen Deprivation Therapy - NOT - aka Chemical Casteration - This treatment is typically in conjunction with all of the treatment options listed, but is by choice. This is a hormone blocker, very bad chemicals. It's not "Chemotherapy" per se, or as people commonly associate it, but it really is. Using chemicals (which all drugs are) to treat disease, is chemotherapy. You will pay a tax for it, a health tax, sooner or later. There are many seriously bad side effects from this treatment, yet it was the one that my doctor wanted to do right away. He had the needle ready. This is an injection into the fat of the stomach. This treatment stops the production of testosterone among other things. It causes your balls to shrivel up and disappear. You will certainly lose sex drive and suffer limp dick syndrome (ED). Often, men grow tits, yes it is true. Osteoporosis, and other serious bone issues will almost certainly be a problem at some point. All treatment methods add to the til, and that is what medical treatment in the United States is all about. As for ADT, it adds $10,000 to $13,000 per QALY to medical providers income. Read a little more about ADT here.
- Cryotherapy - NOT - This method is freezing tissue in the prostate, theoretically cancer tissue. The problem is that there is always collateral damage regardless of the treatment. There is an element of risk with every method. One such risk here is damage to the urethra through which a fluid is circulated during the process to prevent freeze damage of it. The method for cryotherapy is very much like the process for the biopsy.
- Proton Beam Therapy - NOT - This is another method of radiation treatment, it is expensive, new, and not yet known if there is any advantage over traditional radiation treatment. Proton Beam Therapy is touted to have a more precise direction of the beam, hence less collateral damage, but to date this is not proven.
- Brackytherapy - Second safest solution but NOT* for me - aka Prostate Seeding - This is still radiation, but where small radioactive particles about the size of cupcake sprinkles are placed inside the prostate basically in rows. They are usually permanent though some are removable. From 40 to 80 of these particles are placed inside the prosate, and they lose strength over time. They are very strong for the first 10 weeks, so much so that it is not safe for you to hold children. It is best that you stay a safe distance away from pregnant women and children during this high strength period. You know this isn't a good thing in any case, though it is the safest means of radiation treatment. *The NOT for me is because of my Gleason score which takes this method of treatment out of the equation because my cancer would almost certainly return in 5 to 10 years. After this treatment, a prostatectomy is much more difficult and can only be done by a few facilities at this time.
- Beam radiation - NOT - The worst, with the most collateral damage radiation treatment you can get. It's also the cheapest. Like Proton Beam, this is directed radiation, but in both cases, the beam passes through tissue to get where it needs to go damaging cells along the way, and it doesn't stop there. It also does collateral damage on the way out the other side. People often suffer colon and bladder damage which manifests in 4 to 5 years.
- Robotic Laparoscopic Radical Prostatectomy - The necessary evil? My doctor said, "When in doubt, cut it out!" This doesn't come without a price, though it is the most sure way to get rid of contained prostate cancer. The tax? No prostate, no stiffy, and low to minimal sex drive. The prostate is the erection boss, sorry. But... there are things that can be done. There are prosthetics! Yeah, hallelujah! Stay up all night! But, that is yet another surgery, and they themselves come with a health tax. During the Prostatectomy, the prostate which is attached to the bottom of the bladder and the colon, is severed from both, as is the urethra below the prostate. Everything in between is removed which includes the seminal glands to the upper sides of the prostate, there are two of them. The nerves and blood vessels of which there are two channels on both sides of the prostate, which both are commonly severed. In some cases, one or both of these may be spared in hopes of a return of sex ablitiy, but at the risk of cancer return at a later date. The urethra is re-attached to the bladder once everything inbetween has been removed. The Side Effects: There are three major side effects to surgery, and a couple not so major. The biggies are incontinence, ED, and shorter pecker. More on surgery side effects here!
- Laparoscopic Radical Prostatectomy (Traditional) - Also a possibility. The difference between this surgery and Robotic is the amount of collateral damage. In this surgery, you are split from the belly button to the pelvic area. The doctor has to get his big hands in there to do the work. Lots of collateral damage means much longer healing time, more bleeding, and a longer hospital stay. With Robotic surgery, there are five much smaller incisions, one at the belly button, and two on either side. The small robotic arms are inserted through these holes to do the dirty work. Also the robotic procedure has 12x magnification, and results is much less collateral damage and a resulting shorter healing period with much less bleeding during the process.
August 12th, 2019
This was another visit with my primary care doctor where we discussed findings and sought blood test results and also where we decided on the method of treatment I would seek. We chose surgery. I called my urologist to inform him of our choice of treatment and of our choice of surgeon to actually perform the operation, Dr. Ramesy of Knoxville. Dr. Ramsey is the most experienced surgeon in this procedure and he is also one of the associates.
August 16th, 2019
We received a call from my primary doctor's office this morning informing us of the results of my latest blood test. We expected change, and hoped that it would be a decrease, but I guess we really didn't count on it. Much to our elation, my PSA had dropped 42%, from 8.8 to 5.1. My total testosterone had dropped from 560 to 346, and my free testosterone had dropped from 8.6 to 4.59. We'll get that actual paperwork for these blood tests shortly.
These results are really good news, much better than we had hoped, and I intend to get another blood draw as late as possible before the 27th. Well, I didn't get a blood draw before the 27th because it didn't work out. I will get one this week before the surgery, but we have decided that regardless of the results of this test, we are going to proceed with the surgery because if we don't, it is just delaying the inevitable. However we still feel that the blood test is important because it can show how the changes effect the prostate, and the importance of someone doing these things as a method of prevention. I am primarily referring to Iodine.
August 27th 2019
I had the visit to today where we scheduled my surgery (October 30th). This visit is basically a once-over by the surgeon so he gets an idea of what he is dealing with, and to talk about the procedure, side effects and risks. I also have two preperatory visits prior to the surgery for whatever reasons. The doctor stated that I would be restricted from any lifting activity of greater than 10 pounds, and any other straining type activities for a month. That makes my return to work date about November 30th. I will have several interim medical visits as we are also seeking more information about the effect of Iodine on the prostate. This long wait for the surgery has allowed us to the time to do this on our own.
September 5th 2019
I had another blood test on this date to check my PSA again, mostly for my own satisfaction to determine if the iodine I am taking, and the lack of testosterone treatment is still lowering my PSA. I will post the results here as soon as I have them.
What is QALY? Quality Adjusted Life Year. This is a term most people will not be aware of because it is internal to insurance and medical provider bean counters. A QALY is a year you lived, rated on a scale of 0 to 1. 1 is a normal quality of life, and 0 is dead. If you are receiving medical treatment that barely keeps you alive, you might be assigned a QALY of .1 to each year that you lived in that condition. If you received that treatment for 10 years, you have lived one QALY (in that state). From a quality of life perspective, was that treatment period worth it? To some people yes, and to others no. Some people want to be alive regardless of their condition, others don't want to be in that misery. From a monetary standpoint was it worth it? That depends on who is counting the beans, you or the doctors/hospital/medical providers. If you had excellent insurance, then 10 years of good income to those treating you is certainly worth your sufferage. Take for example Prostate Cancer of which this article is really about. Prostate cancer is worth between $163,000 and $210,000 per QALY to medical providers. So you can see that QALY can be used for two purposes, one is to define the value of medical treatment whereas treatment decreases your quality of life, the other is to place a monetary value on a QALY to determine if treatment is cost effective. All medical treatment comes at a quality of life effect whether it is known now or at some time in the future. Future medical effects of treatment carry some level of plausible deniability. e.g. Did you or did you not start shitting blood 5 years after prostate radiation as a result of that radiation, or due to some other factor that just decided to show up?
There is no medical treatment that doesn't impact quality of life to some degree (medical cost). Treatment is a decision based on the value of life over the health cost of treatment. Take for example a dental issue. You get a toothache. Your quality of life is greatly affected. Now this is a rather simple decision because you can get your tooth fixed and live a rather normal life. You will never have the same sensation in your mouth that existed before you had the problem, but the impact on your life is minimal. Dental treatments always require follow up repairs. Maybe in one year, maybe in thirty years, but you will have to address the problem again. You could also think about a simple plastic surgery, these are usually cosmetic choices that come with a permanent cost. When an incision is made, nerves are severed, and scar tissue will form whether it is visible or not. Severed nerves result in a lack of sensation, maybe numbness, and in some cases phantom pain. Very often, scar tissue must be readdressed some years down the road, 5, 10, more or less. Is the cosmetic value worth the medical cost, and I don't mean monetary cost? To some yes, to others regret.
In most cases, people are not going to do much indepth research because it takes so much time. It is far easier to watch a 10 minute Youtube video about someones experience as they saw it. I have read many cases where someone chose a solution because they believed it would end with the best result without understanding the side effects they were going to see down the road a few years. Often times, the only advice a patient will get is from their healthcare provider. I had that very same advice regarding my prostate cancer case, concerning the recommedation to commence ADT immediately. Sure, I was briefed about the side effects, briefly. Certainly not enough to understand just how serious and likely they were. Fortunately, as the doctor stood there with the needle cocked, I had researched enough to understand that I didn't want to face what that was going to cause in a few years! What I already knew, and what the doctor didn't tell me was that this is aka chemical casteration. I ain't gonna be a eunuch!
In my case, had I taken ADT treatment, my very first year would have been a reduced QALY, how much depends upon how much I value my balls, and my decreased function as a result of the treatment. Each year thereafter would have been reduced even more as my bones began to deteriorate, and as my muscles atrophied as a result. These side effects are certain, guaranteed results of ADT! As it stands now with my election of surgery, I will have a partial QALY for the first year, and if full function returns, a full QALY for ever how many years thereafter that my cancer stays at bay.
In the medical industry, with regard to insurance companies and hospital costing professionals, QALY is used to determine from a monetary standpoint if your treatment is cost effective. In other words, accounting professionals are placing a monetary value on your life! Back to link that sent you here
You're to young to have cancer or to be at risk? Tell that to the children at St Judes. They've had just about every form of cancer known to man including prostate cancer, and they are children! Though the well documented concern age for prostate cancer is 40 (6.4*), that just means when it became known. We never know how long it has been in development. In my case, I may have had growing cancer for a decade or more already, there is no way to know that. What we do know is that there are minimaly invasive means to look for it. We also know that the age at which risk begins to increase is 35. An issue that I take is that most doctors are very hard headed in this regard, or at least some of their supporting staff can be. Supporting staff have somewhat of a tendancy to be uppity despite the fact that they have minimal education. A PSA test is just another vial of blood from the needle that is already in your arm during the annual preventative blood test you should be getting anyway. In most cases, you have to request it because very few doctors are going to ask for it. It is your right! *per 100,000 men, but the lifetime rate is 11,550 per 100,000 or 11.55%. Back to link that sent you here
No level of radiation is safe! Radiation is known to cause cancer, plain and simple. There is no level or dose of radiation that is safe, nor one that doesn't cause some level of cell damage. There are many statements in lots of documents that say we humans safely receive many doses of radiation on a variety of levels on a daily basis with no ill effect. They also use the term, "safe levels." As I have stated earlier, there is a factor of plausible deniability. If we don't see an effect immediately, we can deny that it was caused by xxxx. Yet we know that we are experiencing a very high level of cancer worldwide.
The risk of developing cancer of some form, in your lifetime for men is 39.66%, and for women 37.65%. Now we don't know what causes such a high level of cancer risk because we can plausibly deny. What about all those "tolerable" levels of radiation we have received throughout our lifetime for which we know cell damage occurs, yet we see no immediate effect? See This Cancer Level Chart which I stole From PBS.
One of the best examples of excessive radiation exposure is Dental X-rays which most dentists want to do every 6 months, or at the very least, every year simply because your insurance will pay for it, depite the recommendation by the American Dental Association to the contrary. A case of adding to the til, nothing less.
Yet another case of excessive radiation by choice is the now common airport screening systems. Step into the machine and get your dose of radiation. Have you thought about the amount of overexposure that you allow yourself to be given just to pad someone else's til, or for the convenience of the TSA? You can just say NO! I don't go through airport scanners, I request a pat down. The TSA don't like it, but I don't care. I do the same thing at the dentist. I decline the annual doses of radiation that they always want to give me. Some other sucker can pad their til, it ain't going to be me. If I need an x-ray for a single tooth that is one thing, but they aren't going to do those repeated radial scans to me. Dentists don't like it when you decline their x-rays, but it is your right! Back to link that sent you here
What is Cancer? It is often stated that everyone has cancer cells. This is not correct. Everyone has the potential for cancer. Everyone has abnormal cells which are normally destroyed by an otherwise healthy body. When these abnormal cells, wherever they occur, begin to grow out of control instead of being destroyed by the body, then you have cancer. There are many forms of cancer, normally associated with where it began, i.e. the types of cells. Different types of cancer cells require different methods of treatment.
We know that radiation damages cells, but we also know that chemicals damage cells. Yet given these facts, humans actually make the choice to accept these things into their body willingly. There are three basic means by which we humans intake cell damaging things into our body. Radiation by choice is a major one, but so is the intentional ingestion of chemicals in the form of drugs and ingredients in our food. I said three, so the other way is through the atmosphere around us by breathing or through absorbing through our skin. Even then the choice is often ours because we actually choose not to wear a mask to protect us in many situations, like while spraying chemicals, or around sick people, or gloves or body protection when handling chemicals.
Think about all those chemicals in the ingredient list on the foods most people eat. They are often chemicals classifed as GRAS by the FDA. GRAS is the acronym for Generaly Regarded As Safe. They have not been tested! They are simply accepted as safe because they have been in use so long, with no known ill effect, that it doesn't warrant testing per the FDA. You can be sure there is a health price for that, and you can be sure someone at the FDA got greased for allowing it to happen! The only truely safe foods are those without ingredients on the label for which you have to look up what it actually is.
The body is an amazing healing miracle! You can cut yourself with a knife, accidently of course, even quite severely, and the body immediately begins to heal even without intervention, and a healthy body will do so very successfully. Now, if you cut yourself enough times with the same severity, at some point your body will become overwhelmed, and it will not be able to heal fast enough to prevent death. If you think about it, it is no different with radiation or chemical intake. The things that tax and overwhelm the body don't have to be all from one source at the same time. It can be, and often is, cummulative.
Maybe, just maybe, if you were only exposed to one dose of radiation, or ate some chemical accidently, or had that Raid you were spraying blow back on you one time, maybe then you wouldn't see some ill effect some years later. But, it only takes one damaged cell to begin to grow out of control. Back to link that sent you here
Why no concern for another blood test by the Urologists? First I have to give credit to two people. My wife for being the researcher that she is, and our Primary Care Provider, Doctor Jill Wallner of Crossville, TN who we have been seeing for 15 years. We came to know Dr. Wallner because a nurse I was working with was looking for a family doctor and was talking about meeting Dr. Wallner. He commented that she wasn't for his family because she was kind of a quacky naturalist. I said, "What was her name?" I knew she was just the doctor my wife and I were looking for, and she is a gem. We learned through Dr. Wallner, the importance of blood tests, and you can't get to many of them unless you just don't have the money. The laboratory costs for blood tests are not cheap.
As I mentioned above, after my diagnosis we made the changes we had learned about and then nine days later I got a follow up blood test with grossly different results than the previous trends had indicated. Something I was doing was working, and those numbers seriously effect the cancer type diagnosis. When I got my diagnosis from my Urologist, I fully expected him to order a follow up blood test like I know Dr. Wallner would have done. He didn't, so we took it upon ourselves to do it. At this time, no Urologist has requested any follow up blood work, but we are doing it. It has now been 17 days since my last blood test, and we are going to get another before my presurgery meeting with the doctor on Tuesday August 27th. We want to see if my PSA is in a decreasing trend or if it bottomed out on my last blood test. If it is in a decreasing trend, maybe there is now another solution, we don't know. We are thinking maybe a follow up biopsy to see if there is actually a change in the tumor itself. If there is, then maybe we can continue the current trend, keep the prostate and monitor tumor change. Of course this would mean more biopsies, but so be it.
Why the Urologists don't care about follow up blood work? To them it just doesn't matter. The diagnosis has been made, now the solution to is to proceed with treatment in the traditional sense. In my case that means continue with the $70,000-ish surgery. They see no point in follow up blood testing for a condition that is already defined. For me that is so grossly wrong when it may be possible to make change naturally. Urologists call that denial, I call it a better QALY! Keeping my prostate if I have a tumor that is possibly in state of apoptosis is logical. In my case, though I don't like the idea of cancer in my body, it is there and it is rather small and contained. Why not learn just a little from it before we take it out which we are probably going to do anyway? My curiosity makes me want to do that, I can't help it. Back to link that sent you here
The three big side effects to surgery are: There is going to be a period of incontinence. The degree varies somewhat between individuals. If you do the exercises that you are suppose to, and if you don't strain yourself prematurely, the period of incontinence should be a month or two at most. There will likely be some leaks if you strain yourself, so it helps to be prepared for that. There will be some level of the inability to obtain an erection depending on the doctors ability to spare some nerves. If both nerve channels have been removed, you're gonna need a prosthetic. Worse things could happen, you could be 6 feet under. Finally, the third major deal to a lot of guys is the fact that your pecker is gonna be a little shorter. Every dude knows how long his dick is, and he's gonna know if it's shorter. This is a rarely talked about side effect, because dudes just don't want to talk about these three serious issues that can be a little humiliating. The doctor talks about the shorter pecker issue during the presurgery brief, and he explains the fact that he has cut a couple of centimeters out of the middle of the urethra, and he has to pull that back up and attach it to the bladder, well, that urethra goes right up through and all the way to the end of your dick, so guess where that couple of centimeters is going to come from?
On this site, I've tried to bring some awareness to the issues involving prostate cancer in a plain language kind of way. I feel that the issues in the above paragraph are one of the reasons so little is known about prostate cancer among men because they just aren't going to talk about it. If men could shelve their egos enough to talk and learn about prostate cancer, like women do about breast cancer, things could change. No man I've talked to knows his PSA numbers. They just know that the doctor says their PSA is OK, or that they don't need to be concerned about it yet (they're to young). The fact of the matter is, you should know your PSA number, and you should know the concern thresholds that so many ignor! Those thresholds are: a PSA increase of more than .75 in a calendar year, or a PSA 4.0 or greater. If either of those increases occur, you need a biopsy! That knowledge is your only key to early diagnosis.
It is also very important that men understand that although they don't want the side effects of surgery, surgery is the only sure way to know that the cancer was indeed contained within the prostate (because during the surgery a pathologist examines the removed tissue), and it is the only sure way to get rid of contained cancer. Men really need to understand that the side effects from any form of treatment are not reverseable. Surgery to remove the prostate after other methods of treatment is no longer an option at most treatment centers because the prostate is all shriveled up and deformed, and there is a lot of other damaged and deformed tissue as well due to those forms of treatment. If your cancer were to return after radiation and ADT, you are basically screwed unless you can find a surgery center like the Mayo Clinic, Vanderbilt, or Johns Hopkins who can and will treat you. My doctor told me those are the only three places he believes can do surgery on such a damaged prostate. Back to link that sent you here
Negotiate your medical bill! I work for a medical company, and during my hiring orientation 15 years ago, they had a presentation on medical billing. During this presentation, they explained the importance for a provider such as our company to bill promptly. The reason stated is that often the first to bill to arrive, is the only bill to get paid. They also explained that as the one being billed, one should never be overly eager to pay that bill (referring to us as employees, not the general public though to which this information also applies). The reason being is really twofold. First, once you pay a bill, you ain't getting that money back! Secondly, you can negotiate often resulting in a much lower bill. Why, and how it works:
- Don't pay to quickly because if your insurance or other company is slow to pay, you could pay before them thereby giving them the break, you you need it much more than they do. If you pay first, you will not likely get your money back, and if you do, it will take a long time with a lot of arguing and fighting on the phone bouncing from one person to the other as they let you sit on hold hoping you give up.
- Medical providers are used to negotiating bills, they do it with insurance providers all the time. Insurance companies don't just pay whatever the provider bills, they call and duke it out, often having done so in advance. This is a process known as "In network." A provider may be a member of many networks with which they have negotiated pricing. If you are not in the network, you're gonna get billed the full price. Following are a couple of important steps in the process of negotiating your bill:
- Plead your case well. You have limited funds available! You have kids to feed! Don't be to proud to beg, cheat, borrow, and steal when it comes to medical billing. It is a ripoff to begin with, so do your best to get your bill reduced. If you pay your bill in full at the end of negotiation, you can usually get it reduced to a fraction of what it was originally.
- This is the most important part! Once you negotiate your settled price, pay your bill immediately and insist that they email you with a statement that clearly says that your bill has been paid in full! Whether or not you really are, tell them that you are recording the phone call. Save the statement where they say your bill is settled.
- If they refuse to negotiate, just tell them you are going to let it go to collection. In the collection process, they lose half anyway. That's the way it works. Once you let a bill go to collection, you have another chance to negotiate a settlement price, and you also can also insist that it does not go on your credit record. You must settle once it goes to collection or it just might end up on your credit report. Here's the good part though... Medical billing is such a ripoff that creditors typically ignor unpaid medical bills on your credit report. They won't ignor unpaid accounts that you agreed to, but everyone knows that no one agrees to medical bills, they are what ever the provider bills. Back to link that sent you here
Are there better treatment options elsewhere?
By elsewhere I assume you mean in foreign countries, at least that is what I mean here. There are more advanced treatment options out there particularly in Spain and the UK. In the United States, drug companies through the FDA control all options. The FDA is a very crooked arm of the US government which has sold out to big drug makers, and it has been proven in courts many times. If a cure for cancer ever comes, it won't come from the United States. There are billions and billions of dollars in cancer treatment and drugs. That will not change in the US, not ever. Spain on the other hand has had great success in alternative treatments especially some significant advancement in treatment using Canabis products even on Glioblastomas. It is so well proven, you can access and read much of the published information easily and for free. There are two primary reasons that canabis will not be used in the United States. First, there is so much money in keeping it illegal not just for the crooked DEA, but also for drug companies and law enforcement. Marijuana is a natural substance so it cannot be patented, therefore there is little to no money to be made with it for drug companies and consequently none to be passed on to their crooked cronnies at the FDA and DEA. Back to link that sent you here
Click here for: 90 days after the surgery update
I had my surgery early the morning of October 30th, 2019. The surgery went as normal for anyone who has had a surgery where general anesthesia is utilized. For me, it was much rougher than I expected. I never expected to be in as much pain as I was, and I wasn't prepared for the effect of the catheter, by this I mean the pain that it would cause after four days. I had minimal bruising (one small bruise below the middle incision) compared to what I was told to expect. Recovery went faster for me than the other three who were in surgery for the same procedure following mine on the same day, at least that is what the PA told me. So as far as the surgery went, it was routine. Specific to me, the surgeon stated in the post surgery briefing to my wife that I had minimal bleeding, the cancer was apparently contained, and he was successful in sparing the left side nerve bundle.
The Pathologist Report
After the prostate is removed it is given to the pathologist for disection and analysis. In my case, it was discovered that my prostate was normal size, the tumor was eight percent of the prostate, isolated to the right side, fully contained and consequently fully removed. It was also determined to be a Gleason seven. This was all really good news on one hand since at diagnosis, my prostate was enlarged, thought to be roughly 25 percent of the prostate, about 50 percent of the right side. The Gleason score was also nine. Prior to surgery, we were also told that typically, upon removal, the tumor is found to be worse than originally thought, so to expect such results. Needless to say, we were elated with the pathologist report. We attribute the change in the tumor to my taking Iodine and another substance which we had read are both very effective treatments. In hind sight, had insurance and the medical system supported a second biopsy, we would likely have chosen to not to have the prostate removed, and would have likely changed to surveillance rather than any other treatment at all. Unfortunately however, our medical and insurance system is grossly crooked and doesn't support such possiblity, we know because we tried.
My recovery, according to my PA and nurses, has been faster than the average person in my situation. This is not to say that it has been without some minor complications. Specfic to me, by the fifth day, about 80 percent of my consistant pain was cause by irritation of the catheter. The catheter pain was in two places, one being in the bladder where I could actually feel the end of the catheter move about; this was much more minor than the other pain location from the catheter which was about three inches inside the penis. Both of these pain locations were caused by movement of the catheter which can not be avoided if you move at all. The pain is a result of rawness which quickly leads to infection. As the infection worsens, so does the pain. This pain was bad enough by the sixth day of my recovery that I didn't want to move at all which is not good for recovery. Fortunately for me however, I was not experiencing any other recovery complications such as breathing complications nor movement limiting pain cuased by the surgery. As a result I was able to stay rather still without negative complications.
Bruising: Despite I was told to expect significant large area bruising, I experienced no significant bruising, with the only bruise of slight yellowish discoloration below the middle incision.
Pain Medication: I was given IV meds while in the hospital, where I was given my third and final dose the morning after my surgery before discharge. I was also given a prescription for 7.5/325 Hydrocodone for home self medicating. It was my intent to avoid taking those meds because simply put, they are bad for your health in many ways. So, I had prepared some righteous cookies with a special ingredient which I intended to use for pain medication as much as possible to avoid the opioids. I began treatment with these cookies immediately upon arrival at home on the 31st of October, and continued treatment with them through November 6th, at which time I discontinued pain treatment entirely. As a result of those delicious cookies, I only used three of the opioids and tossed the rest. The cookies were very effective pain management.
Pain: As a result of the surgery, pain was severe in that it was impossible to move to a sitting or standing position without assistance for the first three days, then for the next five days the pain had subsided enough that I could move to those positions unassisted if I did it slow and carefully. The pain was constantly improving with time. The surgery pain continued to improve noticeably each and everyday continuously to the point that by the seventeenth day, it was minimal.
On my 26th day of recovery my pain is minimal with only the occasional right side pain spasms. If I let my bladder get to full between bathroom breaks, I will have low bladder pain, so I try to plan those breaks carefully. The low bladder pain is quite sharp and though it doesn't linger like the right side pain (which is more of an ache), it is stabbing every time I set my foot down.
Catheter induced pain and infection: The pain as a result of the catheter was terrible and limiting, even so, I didn't treat with any medications after the 6th of November which was the day of catheter removal. Upon catheter removal, leakage was completely uncontrollable, there was constant leakage. As a result, I severely and regretfully cut back on fluid intake which was detrimental to progressive healing. I had been drinking at least 3.5 liters of fluids daily, and cut back to about 1.5 liters. Though by day 12, this cutback on fluid intake resulted in a lack of urinary tract flush, and a return of infection indications such as urine fluid thickening, odor, and internal itch. Pain within the penis at about the three inch point began to increase whereas it was slowly decreasing. I immediately increased fluid intake to three liters or more daily to include at least 37 percent cranberry juice. By the morning of the second day, all three symptoms had subsided, however, I ran out of cranberry juice on this day and substitued it for pomegranate juice which I had on hand. By the second day after running out of cranberry juice, infection symptoms began to return. Again, I immediately went to the store and replenished my supply of cranberry juice and whereas before, two days later symptoms were again subsiding. These catheter unduced problems are the worst of my surgery side effects in the earlier stage of recovery but urine leakage and sexual function problems will soon override that part.
There was no amount of talk or preperations that could have prepared me for this situation. When the catheter was removed, I had no control whatsoever over urine flow. Fortunately I took along a pullup type adult padded underwear which some would call Depends (a brand). The brand I was using was Tena, and I am quite happy I chose them due to the fit and quality. I never tried the Depends brand. I also took with me, a couple of my wife's light pads which I put inside the pullup on the day of catheter removal. I continue to use this system at night though I changed to normal underwear during the day with the pad inside on day 11 of recovery.
On the day of catheter removal, I used four of the padded underwear, and only one at night. Night remained the same due to using the pads inside which I changed every time it got wet or when I went to the bathroom which was frequently. I tried a couple of different brands of pads, but found the Always brand did a better job of keeping the moisture away from my skin. My wife had ensured that I had a good supply of non-alcohol baby wet wipes available which I used at every bathroom break to ensure I had no urine on myself. On day twelve of recovery I started using a twice folded half sheet of papertowel in side the pad which I could easily and quickly change which made my use of the pads only one or two a day, still only one at night. After the first day, I only used one of the pullup underwear during the day, and one at night due to the use of the pads.
By day four after catheter removal leakage was minimizing during the day with slight improvement daily. Night showed little difference, and evenings were comparatively wet overall showing very slow improvement over time.
I am now at day 26 of my recovery. As I may have stated early, the incision site closures were kind of sloppy. They used surgical glue which worked very well and stayed on the sites for the needed 7-10 days, but instead of taking just a couple of seconds or minutes longer to apply as the manufacturer suggests, they simply pinched together the incision site and applied the glue. It was really sloppy and resulted in two locations that were not fully closed. Those two sites became infected on day eleven after the glue fell off whereas the sites that were fully closed had healed and presented no problems. Fortunately for me, I am rather healthy and it wasn't to hard to fix the infection and get the bad closures to heal, though it is day 26, and they still aren't fully healed.
As for leaking, there is slow daily improvement. I am still leaking day and night, though night is much worse than day, neither is really terrible. The leaks are minimal and I have learned to always be prepared. I always carry a twice folded half-sheet of paper towel so I can replace the one inside the pad inside my normal underwear whenever needed. Preparedness is important and a learned process.
This won't matter for someone who wasn't active anyway, but for me, well, that's another story. During my surgery, the Doctor was able to spare my left side nerve channel. This means that I have about a 40 percent chance of sexual function return over the next year or so, maybe, we'll see. I will not be taking ED drugs (PDE-5 Inhibitors) since their use is has not been proven to work with regard to Prostate surgery and there are several well documented studies supporting this statement, and since their use is detrimental to other things such as your heart which we are not willing to sacrifice. There are other fun and creative ways to play with your spouse, and they still work, so that is what we do. We refuse to let this event change our affection and such, so we will be utilizing those ablitities and see what happens in the long run which I will continue to post here as time passes.
As for sexual function return here on the 29th day of recovery, we haven't started working on that process though it is on the schedule for the next month of recovery and I will keep this updated with that information and our success or failures in that regard. Back to link that sent you here
Choosing your Surgeon
Choosing your surgeon is the most important decision you will make after you choose surgery as your method of treatment. The importance of asking how many surgeries of exactly this type the surgeon who is being recommended to you has performed can not be understated. Of equal importance is researching this surgeons reputation and his result rates. If the surgeon doesn't have at least somewhere close to 2,000 surgeries of this exact type under his belt, you need to find one who does. The experience of the surgeon and his particular reputation is the single most important factor that will affect the quality and the rate of recovery that you will experience. The choice is yours. There is no excuse, and no one to blame but yourself for your lack of discipline in this regard. Back to link that sent you here
PDE-5 inhibitors are common erectile dysfunction drugs better known by brand names such as, "Viagra", "Cialis", "Levitra", and "Stendra". There are now generic forms of these drugs available as well. These drugs have almost certain side effects which may or may not be immediately known. The most obvious side effects to me were headache and increased heart rate. Though I only tried each drug for a very short period some time ago, once I learned of the side effects, I knew immediately that I was not going to continue to use any of them. The long term, not so immediately known effect is the tax on your heart. You might think of it in this way: when you are born, your heart only has so many beats in it, specific to a given individual. So, drug induce your heart beat artificially now for a temporary stiff, and you're going to take that many beats off the end. For me, the temporary benefit is not worth the long term tax.
Fluid intake before and after surgery
When you come out of surgery, you are going to be dehydrated unless you intake plenty of fluids beforehand. After surgery, you need a lot of fluids to flush your system of the drugs that have been put into you, none of which are good for your overall health. You also need a lot of fluid to keep your bladder and urethra from becoming plugged with blood clots that will be especially costly to your health, possible even require more surgery if you let it get to far. After your catheter is removed, you need a lot of fluid to flush out infection that will almost certainly exist in your bladder and urethra due to catheter irritation. I strongly recommend not less than 3 liters daily of which at least one third should be coconut water, at least one third natural cranberry juice (No sugar added), and any balance made up in clear water.
Processed sugar and added sweetners are evil. If you want to do something good for your health, stop the uneeded sweetner intake regardless of the form in which you are taking it.
Although probably every doctor performing a prostatectomy will likely presribe and encourage the use of these drugs, their benefit has not been supported in numerous studies conducted by reputable hospitals doing these procedures. At the end of the day, it comes down to what short term gain you are willing to risk for a longer term healthy life.
90 Days After the Surgery
Here it is the end of January 2020, and I have little effect left from the surgery in the means of pain or effects that I didn't expect. Yes, of course I have the long lasting side effects which we knew were going to occur, such as a lack of sexual drive, and some leakage. The leakage is minimal if I don't cough or strain myself in some way without first doing the kegels that you should well know about by now. If I cough hard or strain myself, well, there is going to be some leakage usually. We knew this was going to occur, so I try to plan accordingly with a kegel pinch. The leakage is better, slowly, day-by-day.
What I do about the leakage is simple. I use one of the same light pads that my wife uses stuck inside a fresh pair of underwear each morning. Inside of this pad, I place a papertowel that is folded in half (or a double half sheet), then folded in thirds for a 6-layer sheet. This is adequate to absorb any leak that might occur without leaking outside of the pad and consequently outside of my pants. I am just not going to have that. I use a new papertowel everytime I go to the bathroom regardless of whether or not it is wet, and I ensure that I always carry at least one (preferably two) spare(s) with me where ever I go, at all times. Most of the time, there isn't much more than a single drop in the paper towel. What really makes the most difference is how full the bladder is before you strain yourself lifting something. The fuller the bladder, the more likely some leakage is going to occur.
The Kegel excercises are important, but they are not absolutely effective. They do minimize leakage, and most of the time they work well. I feel like the doctors try to get us to stop using pads and such to make them look better, but frankly, I just am not going to put up with leaks that come through my pants. I suspect that eventually the leakage may stop entirely, but I am not there yet. I will keep this page updated as time goes on.
I do feel like the leakage is more likely a result of urethra problems than bladder related, hence the lessor effectiveness of the kegel. Ever since the catheter, I can feel the sensation inside the urethra where the most soreness and infection occurred due to the catheter. I feel like once this is fully healed, then I might have full fluid control again. I am just not quite there yet. Back to link that sent you here.
My Prostate Cancer medical costs to date
Note that billing detail is very slow to arrive so these updates will come slowly overtime.
- July 2nd 2019
- Urologist visit - $172.36 - Billed $440.00 - Insurance negotiated discount $267.94 - This billing included $10.00 for laboratory services for the urine sample of which the insurance company paid $2.49.
- July 17th 2019
- Urologist biopsy - $204.49 - Billed $1275.00 - Insurance negotiated discount $1070.51 - This billing included $620.00 for x-ray services which could have only been for the use of the Ultrasound gun, but the Insurance company didn't allow any, so $0.00.
- Pathologist - $1,325.76 - Billed $2,160.00 - Insurance negotiated discount $834.21
- Laboratory - $2,130.15 - Billed $3,900.00 - Insurance negotiated discount $1,769.85 - This was Myriad Laboratories for the Prolaris testing.