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  1. #31
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    Very interesting to read about your cancer journey and I'm glad that it went very well. A bit different outcome from my Radical prostatectomy which I had 10 years ago, there was very little robotic surgery then.

    Unfortunately mine was very aggressive and the cancer had escaped into my body, requiring radiation treatment and I still have 6 monthly injections to keep the cancer cells in dormancy, if I stop this treatment they would grow rapidly again.

    Also the operation weakened my diaphragm and internal organs keep pushing into my right lung which is now about half the size of my left lung which would not have happened with robotic surgery. But in those days it was not available to me.

    In addition, but not related to my cancer, I developed autoimmune hepatitis which is now under control but needs regular ultrasounds and gastroscopies to maintain my health.

    With these I have needed many more hospital treatments and tests but at least as a pensioner public patient I'm not out of pocket unlike you.

    Thank you again for sharing your cancer journey, hoping that this will encourage men to have regular test for this insidious cancer. Early detection is best.

    Peter.

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  3. #32
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    Hi, I really feel for your situation. Dad had his removed by full open surgery 30 years ago at age 60, he is now 90 and still going.

    I know that the anaesthesia can cause problems for some people and again I was fortunate to have had zero problems - apparently the robotic surgery can cause extra problems for some people with lung and diaphragm pain, I experienced some diaphragm pain for about a week. It's interesting in that I've read some rare side effects of anaesthesia mention the development of anaesthesia induced hepatitis in susceptible individuals.

    Yes it's so important to keep checking for this insidious cancer.

    There was an article on the news last night about a new type of PET or MRI scan, it is going to be made available and has a major leapt in the detection of very early, small PSA signature detection in the body. Sounds a bit like the "non approved" scan that I signed my life away for and also paid for before my operation. Apparently it will be made available before Christmas this year - if I understood them correctly and be covered by Medicare?.

    Hopefully this less invasive option will encourage more men to have a test. Like I said, I started having a blood test at age 50, PSA shot up when I was 59 but nothing was found, and it's been a 9 year cat and mouse game to get to where I am now.

    BTW I know I'm not home clear yet, only regular PSA blood tests for the next 5 years (or more) can confirm that there is still not some small cell hiding somewhere else in me.

    I wish you all the best and hope things stabilise for you. Thank you again for sharing and making other men think long and hard about having a simple blood test or hopefully this new scan.

    Mike.

  4. #33
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    Mandj I had exactly the same procedure as you about 4 years ago and also had to pay a hell of a lot in on the medical expenses but it was worth it I guess.Only problem is the young gentleman between my legs does not stand up for the ladies anymore.(

  5. #34
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    Hi, the surgeon discussed that likely outcome with my wife and I, and even more likely with older men. I had already discussed this with her, along with the other possible problems of prostate removal. At my age I was not really concerned about that, especially when compared with not being here in this life for her. Unlike the normal male stereotype portrayal, I love cuddling her and have always held her in my arms at night, usually until she is sleeping, I do the same in the morning as she wakes. Like most females she absolutely loves all the cuddling and affection. She said that having me here was the only thing that really mattered to her - I am so lucky to have found her.

    However even at just over four weeks post opp, the "old gentleman" is showing keen interest, so things are looking up (pun intended) and it would appear that the only thing that needs recovery time are the reverse flow shut-off valves, if you know what I mean. So even if that does not improve, one of those simple rubber rings that help stop drain back would likely be all I need, sensations are fully operational even at this early stage.

    I was reading some new research the other day, they believe that if the nerves have been spared then it's likely the temporary damage to various blood vessels that feed the needed nerves that cause a lot of the long term recovery problems, and these blood vessels can take up to two years to fully recover.

    At the end of the day, I 'll take not dying from P Cancer over a flagpole in the front yard

  6. #35
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    I found this 2018 info on the current advanced options available in Australia:

    I actually had an even more advanced biopsy than the one mentioned, it was a robotic guided transperineal biopsy that does not use a template, the robotic controller is loaded with the digital data from the MRI scan and it locates and targets the specific site of the suspected cancer cells. I stayed overnight in a hotel after the procedure and then drove the two hour trip back home in the morning, a totally different experience to the first ultrasound guided 24 needle biopsy that I had 8 years earlier, and no need to take antibiotics for a week afterwards, and they make me feel sick for the entire week. The urologist surgeon also wanted a PSMA PET scan prior to surgery. The surgeon knew exactly what he was dealing with before he went in.

    The future of prostate cancer diagnosis is right here, right now — Dr Jeremy Grummet – Melbourne Urological Surgeon

  7. #36
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    BTW more about the last post and link:

    1: The MRI shown there is very "very" poor when compared to the MRI image I had done, mine was exceptionally clear and unbelievable detailed, that image looks like the one I had done 4 years ago.

    2: The PSMA PET scan is also very "very" poor compared to mine, the PET scan I had used a new injection material, currently unapproved in Australia, I had to sign a waver stating that I understood the risks of having this injected into me. The resulting (very detailed) digital images show any active PSA signature in blue, the depth of colour apparently indicates the concentration, it confirmed the exact same spot as the MRI in the prostate in deep blue, it also showed a faint blue haze in the other prostate lobe, nothing had showed up on the MRI in that location, there was nothing shown anywhere in the body, lymph nodes or surrounding tissues.

    Also when looking at symptoms, you can have none and still have cancer. Having to pee a lot, urgency, peeing three or more times at night, slow flow (epically as you age) are ALSO signs of other conditions, not just an indication of prostate cancer. More commonly it's a sign of an enlarged prostate, BUT, I had these symptoms and I did NOT have an enlarged prostate or a bladder infection, mine was caused by an irritable bladder causing an urge to pee but without much urine in the bladder, on top of that I was drinking a little too much water - sodium levels in my blood were slightly low, when you lay down at night, that excess water in the body tissues drains into the bladder and you really do need to pee, even with the catheter in I could fill a LEG bag to almost busting in 3 hours at night, there is NO WAY you could go all night and not get up to pee if you do that, and I am usually in bed for 9 hours. I wish they would ask more detailed questions before scaring men with these symptoms, but then again, if it makes you have a PSA blood test then I guess that might be a good thing, on the other hand some men will dig their heels in and not go for a test out of fear of what they might find - that attitude had to change.

    The follow up PSA tests I have to have will indicate just how accurate these scans have been.

    When they publish the statistics of men who had their PSA go back up after surgery (cancer still detected) when compared to other procedures, I wonder if they take into account the fact that the cancer may not have been contained but the prostate was still removed anyway, what about the skill of the surgeon to actually not cut through the cancer when operating, and the many other factors that can skew the results of each different procedure used to treat P-cancer. So many thing to consider, and I have been researching this on and off for over 8 years but it's still not an easy decision when you get diagnosed with cancer and actually have to pick one.

  8. #37
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    Default Never give up.

    This man's story might inspire us not to give up, even when faced with a worst case diagnose.

    He had a PSA of 1200 and scans showed widespread metastasis to bones, lymph nodes and various other organs.

    https://people.eng.unimelb.edu.au/lee/pc/first.html

  9. #38
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    I was interested to read about the statistics and of the man with a 1200 PSA blood test.

    My case was with a much lower PSA and during the operation it was discovered that my cancer had already left my prostate and was affecting the lymph nodes and other parts.

    For about 6 months, after seeing a new GP who wanted a full check up, my by monthly PSA tests were consistently around 4.8 to 5.1, which because of the accuracy of the equipment gives an average of about 4.9, high but satisfactory reading considering my age.

    Then 2 month later my next PSA test came in at 5.3 showing a small but regular increasing trend, so my doctor gave me a physical examination and that based upon this, and considering my brothers had prostate cancer, he referred me to a specialist.

    The specialist decided that a biopsy was necessary, which unfortunately showed that I have a very early stage of prostate cancer and that it needs to be removed. I'm told that as it is in its infancy removal will cure me.

    Unfortunately the operation showed there was more cancer then the biopsy showed, the tests on the removed prostate showed that it was an aggressive type and every three months I had more PSA tests. After 9 months there was a definite trend emerging so the Urology department referred me to the Radiation Oncology department of the Austin.

    After all kinds of tests, scans etc I was advised to have a 3 year course of Hormone deprivation treatment as well as a seven week daily radiation treatment, which I did.

    During the 3 years my PSA was always undetectable but within 6 months of finishing the Hormone deprivation treatment my PSA started rising again.

    Rather then wait until it got worse I went back on the hormone treatment, even though it has some annoying side effects. I am still on it and my original diagnosis and operation was 10 years ago.

    Different then now I suppose and now with scans more readily available and new techniques my treatment might be different, but I followed the then prevailing advice and techniques that was then in vogue. Also there were no support groups that I knew of and very little information for it seemed more like a secret men's business.

    I have never regretted my actions for otherwise I would not be here now. My two brothers that also had prostate cancer have both passed away, one because of the cancer and the other with the cancer but because of a stroke.

    The comparison between then and now is that the hormone deprivation treatment was not yet approved for prostate treatment on the PBA and my specialist, as head of the hospital department, had to ring regularly to Canberra to get approval to prescribe it.

    So to sum up my PSA was low but regularly testing showed an increasing trend, so a simple PSA test needs to be followed by a few more to see if a trend is emerging.

    Peter.

  10. #39
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    Hi Peter, yes that's the big thing with the PSA blood test, they still debate the effectiveness of it, but they are usually referring to someone in the age category having their first and only test and it shows above the age adjusted base line. They also fail to mention that if you start early with the PSA tests then you have an established baseline before any cancer or other condition starts to show up causing the PSA to rise. That was my case, low normal PSA for years, then shot up to PSA = 10, found nothing, then PSA went down to 3.2 for six years, I paid for an MRI four years after the first scare off my own back as MRI's were showing good results at the Wesley hospital, nothing found and all clear, then last year PSA started to rise, getting to around 5.7, the result is this thread.

    In some ways I was lucky to have had the operation this year and lucky that I decided to pick my specialists, after talking to the specialist clinic I then demand my GP write me a referral to this prostate clinic. With the advances in MRI definition and the advanced biopsy and cutting edge PET scan now available, I feel I made the absolute best decision of my life, whatever the outcome of the ongoing PSA blood test that follow with any treatment you might select. I won't regret my decision, only the fact that almost NOTHING was covered except for the normal private hospital bill's.

    I totally agree, you did the best you could at that time and with diagnostics available back then. Some might argue that I could have taken a wait and see approach, but they neglect to consider all the facts including the mental health of the patient (me) and the effect it has on our health and life. It's complex, and every case is different, in the end it's out decision and pulling our head out and researching as much as possible is the only way to make an informed decision - BEFORE - we get diagnosed and allow our fear and confusion of a cancer diagnoses to influence our decision. I knew eight years ago what I would likely do in the event that I got P-cancer, over the years I have always kept a look out for the latest advances, techniques and findings.

    Would you believe that I didn't know about all the support groups that are now available, fortunately I haven't needed any (yet!), thanks again for sharing that update on your progress, I hope things keep stable for you for a long long time into the future, and for all the other men following their treatment when faced with this bastard thing.

    Mike.

  11. #40
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    Default New Prostate cancer treatment breakthroughs in Australia.

    This might be of interest for those who have not seen it:

    Late last year I read about a patent going through a trial at the Wesley in early 2017, He had years of other treatment for advanced prostate cancer and I think it was this treatment being trialed. I can't find the article at this time.

    This first PDF traces the study including in Australia from way back in 2002 to 2018 and a new way to target the cancer.

    http://theranostics.com.au/wp-conten...ed-Therapy.pdf

    https://biotechdispatch.com.au/news/...r-breakthrough

    In Brisbane at the Wesley Hospital. http://wesleymedicalimaging.com.au/w...herapy-WEB.pdf

  12. #41
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    Quote Originally Posted by trevor1944 View Post
    Mandj I had exactly the same procedure as you about 4 years ago and also had to pay a hell of a lot in on the medical expenses but it was worth it I guess.Only problem is the young gentleman between my legs does not stand up for the ladies anymore.(
    I had 8 weeks of radio therapy back in 2013 and my young gentleman is the same, but at least i'm still on the right side of the grass.
    Cheers Fred



    The difference between light and hard is that you can sleep with the light on.
    http://www.redbubble.com/people/fredsmi ... t_creative"

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  13. #42
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    Default The last few links that I'll post:

    I wanted to add these last links as they really "cut to the chase" and may help some make a more informed choice. Really worth looking at.

    https://youtu.be/HKn9HEq3HyM Very good discussion on why the normal way of doing a Biopsy is just plain stupid. This is still in current use in most countries.

    The following link is one step further again and is explained in this following Media release, this is how my last biopsy was preformed.

    Australian first prostate biopsy technology launches at Pindara

    These following videos are just brilliant to listen to and easy to understand and would be of great benefit for anyone trying to come to grips with what is the best course of action.

    https://youtu.be/FbIq19M_3lM A video presentation of Prostate function, enlargement and cancer.

    https://youtu.be/jD5azsFCom0 What are the early warnings signs

    https://youtu.be/1tukbMRudqM Tips for people who just received the diagnosis of cancer.

    Note: That following is a 2013 video and the current MRI and new PSMA PET scan options are not included, but a really good discussion never the less.

    https://youtu.be/fyPwmACSd7Y Options for Prostate Cancer Tests

    https://youtu.be/hqedugBvH4c Discussion on Cancer Treatments

    https://youtu.be/KBz6kWpUtwo What can you do to prevent Prostate cancer?

  14. #43
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    Received my first PSA test results today. The operation was eight weeks ago and I had the PSA blood test one week ago.

    My pre-opp PSA was 7.8 and climbing, my post-opp results are - 0.00 - Officially I'm not cured, it takes at least 5 years before they might suggest that as there is always the chance that one tiny cell may have escaped and be hiding somewhere, but I'm officially classed as "in remission" from prostate cancer. Next test is in another 3 months, after a year it goes to every 6 months and after that every year.

    Mike.

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