GREG'S LEGACY

Specialising in the human experience of Living with prostate cancer – warts and all

Posts Tagged ‘Transurethral resection of the prostate

Lee’s side effects of hormone therapy ADT

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Drug side effect

Drug side effects

I began hormone therapy soon after my diagnosis of PCA. My urologist began what is called combined androgen blockade. This consists of a four monthly injected implant LHRH analog agent in my case Eligard. This mainly targets the pituary gland that signals the testes to produce testosterone and the implant prevents this occurring (chemical castration).

I also take a daily anti androgen tablet (Anandron) which targets the adrenal glands that also produce testosterone.

Most readers will be aware of the reasons for the hormone treatment in the management of cancer. In my case I have been advised I will most likely be on this medication for the next three years, post my radiation treatment. (You little beauty)

A search through the web will give you a heap of information regarding the different hormone treatments available and the drugs including the known side effects you can expect to experience. The web will also give you a heap of information in forums from men affected by this treatment. As each person is different in their responses to treatments and there are so many different forms of hormone treatment there is vastly different points of view in the side effects experienced by these men.

I am attempting here to give one example of the effects of a standard hormone treatment on one person, namely me. For the past four months I have been battling a huge change in my quality of life and would like to sum up here my experience. As you will see it is not a happy place to be in for the moment.

Drug side effects

Drug Side Effects

The side effects that I experience can be divided into catagories.

Sexual: Although some of my problems can be attributed to my cancer and TURP procedure, the loss of libido is most notable. I cannot remember the last time I have been sexually aroused and I hardly even think about it although I do apologise to my wife on a regular basis and give her big meaningful hugs.

Physical: Extreme fatigue for most of the time. I am reasonably OK while siting doing nothing, but the moment I become active I experience weakness in the legs with a loss of co-ordination. I have no strength and find it difficult to walk any distance faster than a shuffle. My wife has more strength to lift any articles that have any weight. After walking for 50 meters or any exertion to complete a task I am puffing and panting like an asthmatic.

I constantly wear a light jacket as I frequently become cold and have difficulty maintaining body temperature. This effect is real weird as I think of it as my hot flushes but in reverse as I get cold easily?? My muscle tone is disapearing and replaced by obvious flab and I have developed a nice set of 12 year old boobs. My hair and beard though have become nice and soft. My testicles and penis have shrunk significantly. I find it difficult to drive any distance as I become overwhelmed with the desire to fall asleep and in the case of any extended travel when I am not able to drive, I sleep in the passenger seat from one destination to the next, makes the trip go faster.

A real interesting side effect is a visual one. I have extreme trouble changing from a bright environment to a darker one. If I go from a bright sunlit view to indoors I am almost blind for a while, not being able to adjust to the light difference. This has led me in a couple of memorable times of seeing the blue sky as pink and a green sometimes blue patch of light in the centre of my vision until I can adjust and this may take several minutes. This side effect is a known one for the anandron medication, but it is still weird and worrying. I also have problems sleeping normally at night, often I am dead tired at 6pm only to be wide awake at 1am???? I also suffer stiffness and pain in and around the pelvic area, thighs and lower back.

Mental: I have diminished motivation. Things that used to inspire me I no longer care about. I used to look forward to activities like fishing, sailing, projects around the house etc but not anymore. I have trouble verbalising ideas or offering opinions. I have trouble focusing and decision making. I have difficulty prioritising tasks and my spelling and memory has gone out the window. I experience depressive moments and emotional instability from time to time.

Systemic: While not experiencing any problems at present time I have read where I am vunerable to ostioporosis and cardiac problems.

That just about wraps it up for me apart from the following: I recognise that I will be dealing with these side effects for some time and I am actively trying to sort out a better way for me to deal with them. I suspect most of these side effects are a result of the anandron medication, and I am doing some investigations to try and prove this. I am also forcing myself ( I repeat forcing myself ) to carry out a solid exercise program to try and turn these effects around. Hopefully I will be able to report on these results in a post further down the track.

Lee aka Popeye

Would PCa Screening Have Helped Me

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Prostate Testing and Screening

I have been a contributer to Greg’s Legacy for a short period of time. I was diagnosed in March 2012 with advanced prostate cancer, Gleason 9 graded T3/T4 with 18 out of 18 core samples positive at between 80% and 100% PCA cancerous tissue also involving the lymph system.

Scans taken in March indicated that there was no spread of the cancer to the bones, lungs or liver at that time.

I had been suffering urinary symptoms since August 2011 which increasingly worsened until finally in late January 2012 I sought help which finally led to my diagnosis in March. After diagnosis I was immediately put on ADT ( Hormone therapy) to stabilise the spread of the cancer. My urologist believes that he has a chance to cure this cancer for me using ADT , HDR Brachytherapy and External Beam Radiation.

Due to my urinary issues I had to undergo a TURP procedure in May 2012 to correct my urinary symptoms before I could undergo the radiation treatments. I am almost ready to proceed with the brachytherapy hopefully sometime in September 2012 and am awaiting word from the specialists in Brisbane to confirm the dates.

At diagnosis my urologist made a statement to me after some interrogation of my immediate past 15 years including the fact that I had not been tested for prostate cancer for the past 14 years. He stated the following:  ” You have most likely had this cancer for at least the past 10 years when you have been symptom free”. As I was 64 years old at diagnosis that meant that this cancer may have been picked up when I was 54 years old if screening was the practice.

After receiving this news I was at first upset that perhaps if it had been picked up early I would not be going through this advance stage and its implications that I am now dealing with. However more investigation and wider reading by me on the effects of prostate cancer, treatment, side effects and statistics have slowly changed my mind to be more open on this subject and I offer the following to any readers who may be interested.

There is much debate in the prostate cancer world at the present time as to the relevance of screening men over the age of fifty or forty if there is a family history of prostate cancer. Having now read fairly widely on this matter it appears most of the controversy centres around two main issues. The first issue is the aggressiveness of the cancer that may be diagnosed and the second issue is the debilitation of the side effects of any treatment given to these men.

It is a well known cliche that most men if they live long enough will test positive for prostate cancer. Prostate cancer is in most cases a slow growing cancer and many men who have this type of cancer will never experience any symptoms and may die with the disease rather than because of it. It is interesting to read a quote from the discoverer of PSA Dr Richard Ablin who made the following comment. ” The PSA reading as a test is hardly better than a coin toss. It cannot distinguish between the two types of prostate cancer. The one that will kill you and the one that won’t.

Another piece of information I came across which I found interesting is the yearly prostate cancer death statistics in Australia. Approx 2900-3000 men will die from prostate cancer in Australia each year. Of these 58%  are men aged 80 or over, 82% are aged 70  or over and just 2.8% are aged under 60.

The main debilitating side effects from treatment of prostate cancer is incontinence, erectile dysfunction and ejaculation reversal. If you go in search of statistical data related to these side effects you will be hard pressed to find results from different studies that correlate with each other. Rather you will see wide variance of results such as between 15% and 60% of men experience incontinence one year after treatment or between 20% and 70% of men experience sexual problems one year after treatment. All forms of treatment from surgery to radiology, brachytherapy and other forms have the same widely ranging data figures.

Since I became symptomatic back in August 2011 and following my TURP procedure I now have a small taste of what it can be like to have incontinence problems and erectile issues. I have been unable to have sexual relations for nearly a year now and since the TURP I am still wearing pads and experiencing pain on urination.  I still have nocturnal urination issues  sometimes several times throughout the evening. I now know quite a few prostate cancer survivors personally who have advised me of their issues after treatment. A quick read through any prostate forum will reveal that incontinence and sexual issues are very common indeed and debilitating for these men.

So here I am looking at my situation at the present moment. The question for me to answer is, do I regret not being tested earlier so my cancer may have been found and treated easier? If I had written this article two months ago you would have found that I was bitter toward the medical industry for not advising or carrying out any testing during my 50’s. I was bitter that I had to become symptomatic for the cancer to be diagnosed and when it was diagnosed it is advanced. My thinking then was that,  “Man if only I knew back then I could have had it fixed easily”

Education and information is a wonderful thing as it has the power to change opinions and actions. I have since given a lot of thought to the question of “would I have been better off fixing this cancer back when I was say 54 yrs old”? My answer is really my acceptance to myself that things have worked out as they have and cannot be changed. Throughout my fifties I enjoyed a satisfying sexual life, I had no urinary issues and led a good life. At 64 yrs this all changed but I now understand more and I think to myself that perhaps, the past 10 years could have been a lot more miserable for me if I had treatment for the cancer back then due to these side effects.

So would screening for prostate cancer have helped me. I don’t think so and in fact may have led to a loss of quality of life that I enjoyed throughout my 50’s.  I am now satisfied that things have worked out for the best given this cancer is a reality for me to deal with right here and now, for better or worse. If in the next five years I do not die from something else, chances are that this cancer will run its course. In five years and a bit I will be seventy years old which puts me nicely into the statistics for prostate cancer deaths in Australian men.

Further Reference Reading

http://ses.library.usyd.edu.au/bitstream/2123/6835/3/Let-sleeping-dogs-lie.pdf

Lee aka Popeye

Four Monthly Prostate Cancer Review Negatives and Positives

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Christmases past

Negativity takes over

I have just attended my urologists practice last friday afternoon on a scheduled review appointment and I was in a foul negative mood. My mood must have affected both my doctor and my wife as it was as if a dark cloud had descended on the meeting and I suddenly became a target for both of them.

It has been almost four months since my diagnosis and I am due for my next hormone implant injection come the 17th July. So with nothing better to offer as a post I decided to allow these two themes to guide me through and weigh up the negatives and the positives as they have happened to me over these past four months and throw them out there and see what comments I might stir up.

To be fair to my wife and urologist and to explain to everyone up front, I felt so bad after fridays meeting with my doctor that I emailed him an extended apology that evening and spent the next couple of days trying to make it up to my wife. To my urologists credit the apology was accepted without any problems and my dark mood on the day was mellowed by the doctors explanations to my problems and the ghost of Andy Ripley looking over my shoulder and whispering in my ear “Read my poem again you idiot.”

As a lead up into my dark mood on the friday I had spent the last eight weeks since my TURP procedure with  typical symptoms that had not fully resolved since the procedure. In fact I was collecting more symptoms along the way. The bleeding and purging of prostate material had continued and I was still experiencing pain on urination particularly throughout the daylight hours. I had developed stiffness and pain within the pelvic region and thighs. I had developed off and on chills and fever and an inability to stabilise my body temperature from time to time. My main ADT side affects of tiredness and heavy breathing were still with me. So I was getting a little worried. I had dark thoughts that these symptoms were possibly a result of the cancer extending itself subtly throughout.

As I began to unveil my diagnosis of my fears my doctor told me to drop anchor for a minute and presented me with the medical facts of my rotten position and the deepening symptoms I was experiencing. He explained with diagrams what he had done to the prostate during the TURP procedure and the fact that most of the tumour had been removed leaving behind an empty prostate sac that has two saggy edges near the bladder. My problem with pain and shut off while urinating throughout the day was because the bladder was not filling to acceptable levels and when trying to urinate the two edges of the prostate sac would flap together causing a shut down with associated pain. During the hours of darkness the bladder would fill sufficiently for the pressure to be such that this would not occur hence no pain throughout the evening. In time the remains of the prostate sac will shrivel and will not cause any problems. My other worsening symptoms are being caused by bacterial prostatitis which is being treated by ongoing antibiotics. He showed me in my pathology results with my urine samples that my leukocytes had risen from less than 10 to over 1000. This indicates a massive lot of crud still to be expelled from my urinary system.

My doctor then went on to advise that my latest PSA test was 0.01 so my prostate cancer at the moment wherever it happens to be within or without the remains of my prostate gland was not going anywhere for the moment. He reminded me that we have one shot at stopping this thing and it is with ADT combined with HDR Brachytherapy and External Beam Radiology. But I have to become symptom free before I start further treatment. At this stage it could be late August/September before we continue.

My other negative views which I have expressed in the past and did again at this meeting upset my doctor and my wife to the point where they were challenging my logic. I will explain these here as I said at the begining I would look at both the negatives and the positives according to my understanding.

Balancing the prospects

Proper Balance Needed

In the case for the negatives. I have almost reached the age of 65 years and have led a great life. No one lives for ever, we all have to head off this planet sometime. I don’t fear death but I do fear a long prolonged down hill slide to death. I do not wish to prolong this type of degredation for my family. So for me 65 is a pretty good innings, a lot of my friends and family were not so fortunate. So in good faith I am ready to declare my innings but not so my urologist and my good wife and I might add  bloody Andy Ripley.

For the positives and to be fair here it could be said (and was actually stated by the urologist) that from my initial diagnosis and cancer grading of gleason 9 that this prostate cancer had most likely started within me some 10 years or more before it became symptomatic. That would mean that with proper screening I could have been diagnosed with prostate cancer at the age of 54. Now if that had of happened through early screening I may not have been writing this post as this thing may have been nipped in the bud way back then when it was less agressive and easily cured. There was no way I would have been happy to leave this planet then. I was still a young and vibrant man of 54 with the world at my feet at the time.

The next positive I confronted was the ghost I uncovered in my last post and was really the reason I apologised to my urologist. I couldnt get the spirit of the poem written by Andy Ripley out of my head and it is worth repeating here.

Dare We Hope? We Dare

Can We Hope? We Can

Should We Hope? We Must.

We must, because to do otherwise is to waste the most

precious of gifts, given so freely by God to all of us.

So when we do die,it will be with hope and it will be

easy and our hearts will not be broken.

Andy Ripley 2007

So here I am feeling pretty ordinary. My life since late January this year has gone down the drain. My expectations of any real future are on hold. I now need a pad in my jocks to contain small accidents. It looks like any hope for a continuation of a satisfying sex life has long since gone out the window. How my wife really feels about this is really unknown to me although she has stated that it is not a real issue for her ( I am not sure how to really take that). My best mate and spouse for forty years now has to share, care and continue to love this poor old sod for better or for worse. A real positive for us is the fact that at the moment and for the past four months our relationship has expanded considerably. Being straight up with each other and being satisfied with a hug and holding hands is sustaining us through this time. I pray this will continue. My mental and physical abilities seem to have flown out the window in the case of ever being able to return to any previous work positions and responsibilities that I once took pride in. These abilities are now gone from my reach.

So here I am stuck with a bloody great spiritual poem, an inspirational story about a man who wrote it. A urologist who will not let go and refuses to concede defeat. This man is almost spiritually revered in my home town of Mackay and whose reputation is beyond repute. I am also stuck with a family including my wife who I know loves me and wants our life to continue together. My son does not want to lose me nor does my daughter. The grandkids mostly the young ones are not really sure what is going on. My special grandson Jesse who is seventeen is a different matter. His medical condition and history is a complete unknown story on its own to the world and a modern miracle that he has survived. He and I have a special bond and I am priviliged to have been his friend and mentor throughout a huge part of our lives together.

So, as from this day I have committed to a positive attitude for the next few months. I will turn up with a smile and a shes right mate attitude for the next few months. I will commit to the HDR Brachytherapy and External beam radiology when it is deemed that I am fit enough to endure the treatment. However I reserve the right to make new decisions after these events depending on how it all turns out.

Positives and negatives

Positives and Negatives

Regards

Lee aka Popeye

I must submit some popeye photos of me taken some years ago. Please remind me sometime?

Related Articles

https://kingvalley.wordpress.com/2012/06/21/an-update-on-my-recovery-from-the-turp-procedure/

https://kingvalley.wordpress.com/2012/06/21/an-update-on-my-recovery-from-the-turp-procedure/

An update on my recovery from the TURP procedure

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I thought I would update my recovery progress from the TURP procedure I had in May 2012 the story of which appeared in my post on the 14/05/12 and titled “A  T.U.R.P Experience for anyone interested”.

In that post I summarised that I was glad I had the procedure. It has been five weeks now since I had that surgery and I am not so sure that my initial confidence still holds true with me. While most men who have the procedure appear to respond favourably there are a few who experience ongoing problems and I am begining to fear I might be one of them for the following reasons.

While it is true that my flow has increased tremendously I am still experiencing incontinence problems and rely on small pads to take up the slack. I suffer leakage at times when I bend over, cough, sneeze, pass wind etc etc. My nocturnal habits are the same as prior to the procedure and I am up several times throughout the evening. I have urinary urgency more often than before and I have had a few accidental moments.

By far my biggest concern is the pain associated with urination throughout the day. The flow generally starts fine then before the bladder is completely emptied the flow suddenly stops and pain begins in the pubic region spreads to the pelvic area and builds in intensity for approx 30 seconds before a feeling of backflow occurs and the pain subsides. This issue does not happen throughout the evening in my nocturnal visits to the toilet.

I figured that the reason I was experiencing these painful episodes throughout the day and not throughout the evening was because of the following. I am only five weeks out from the procedure and during the day I am more active which may be inflaming something in my pelvic area constricting the urethra through inflamation and swelling. In the evening during sleep and low activity this inflamation settles down.

Now that I am back home I have backed off as much activity throughout the day as I possibly can, stopped having a beer or two, coffee and tea and generally behaving myself trying to see if this may correct my problem. At the time of writing this there is no change. My next appointment with the urologist is on 6th July and I am hoping to see some improvement otherwise I will have to declare this to him. I am really dreading having to have some other procedure done down below to fix up whatever may be amiss.

There are many things this could turn out to be and include bladder issues, scarring, strictures, blockages so I will keep updating in my posts as new information becomes available.

On a slightly different issue regarding my original T.U.R.P the surgeon removed 14 gm of prostate material and this was sent to the pathologist. The results confirmed the original biopsy results in March of gleason score of 4+5=9 with 80% of the prostate material cancerous tumour.

Prostate Cancer – Don’t Panic

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So, you have been diagnosed with Prostate Cancer. Don’t panic! Time is on your side and that might help you make better treatment decisions than I did.

Did you know that there are three types of biopsies? Nobody told you? Well that’s par for the course. The doctors won’t tell – you have to ask. Without research, you will never find out if you received the least damaging procedure.

Prostate Cancer is a slow growing disease that, whilst it will not go away without intervention, will not take your life overnight. Many men fully live out their lives without being bothered by the cancer within.

There are five treatment options being radical surgery, chemotherapy, radiation, hormone therapy and active surveillance or watchful waiting.

The first four will leave you less of a man and damage your quality of life. In most cases, they will make you impotent with no further sexual activity … ever! Many also suffer incontinence either temporary or permanent. They will each damage your immune system making recovery much more difficult.

Before chosing any of these options, do anything you can that will boost your immune system. This is usually diet based eating foods with anti-oxidents but includes supplements like lactoferrin that I use or probiotics like  ‘Inner Health Plus‘. Do it now and maintain the only resistence your body has.

Within each of these four radical treatment groups, there are a number of options. It is not about which of the four treatments you will chose, it is about which alternative within that group is best for you.

For example, when I was diagnosed, I was recommended a TURP procedure which I blindly accepted. At that time I was unaware that there was more than one way it was done. I didn’t know that there was a nerve sparing procedure that does not take out your sexuality. It seems that my urologist didn’t do that procedure. Now, I am stuck with the consequences. The problem with specialists is that their particular procedure is the only one they understand.
This ‘multiple choice’ applies to each of the treatment options. It is your life and you need to chose the best option for yourself. Your doctors are too blinkered in their own methods to be a reliable ally.

Watchful Waiting and active surveillance give you time to research the best alternative for you. Even if your cancer is so far advanced that it will take your life, you are not going to change that – and that is the truth.

Take control of your treatment … do your research before accepting any recommendation.  Life is not a dress rehearsal – it is your life and your choice.

Treatment Options