I was biopsied in Feb 2006 at the PA hospital in Brisbane and several cores were positive for cancer with Gleason scores up to 9. It is quite stressful to receive this news. The registrar who gave me this news thought I probably wouldn't be eligible for surgery because I was 55 and had aggressive disease. He did order a CT scan and a bone scan but put a 6 week priority on the request saying that not much happens in the early stages of Prostate cancer. The scans were clear so they did offer me surgery and I accepted right away. I didn't have private health insurance at the time so the other option of high dose rate brachytherapy was probably out of the question.
I had my radical prostatectomy in May 2006. There was extracapsular extension but the surgical margins were clear and there was no spread to the seminal vesicles so the stage was T3a. Looking at the Yananow site I see that of some 460 guys who have had open or laparoscopic prostatectomy only 11 are staged T3 or above so I guess that it is not a very good bracket to be in. [The Indexes show the clinical, not the pathological staging - see Staging] I stayed 3 nights in hospital and went home with a catheter for a week and my recovery was uneventful. The hospital had taught me to practise pelvic floor exercises [aka Kegels] pre-surgery and continence has not been a big problem. I still do the exercises every week mainly when driving.
The ED has been fairly total. Ten weeks after surgery my wife informed me that she was going to fix herself up with somebody else. So I said that she should do what she wants and I moved into a separate room in the house. So we have been separated since August 2006. We have young children. My kids are more important to me than anything, so I don't see why I should move away from them at this stage of my life cycle.
Nine months after surgery in Feb 2007 my PSA was detectable at 0.03ug/L. [This would be using ultra-sensitive PSA tests - see some of the problems with this test at Ultra Sensitive PSA]. I think that mentally that was the biggest shock because I knew that once the disease has spread it is incurable. At that point the Urologist indicated that my survival period may be 4 years. [No doctor ever has the right to tell anyone how long they might live - but see The Elephant In The Room] I am looking for a couple of years more than that now. My first response was to log on to the internet and order some Prostasol from a place in London. As my PSA was very low I started on the maintenance dose of one tablet per day. Initially there was a very noticeable side effect of painful breast swelling. When my next three monthly PSA was down to 0.01 I reduced the dose to ½ a tablet per day and then ½ tab every 2nd day and the side effects dissipated. The PSA didn't come back to 0.03 until August 2008 at which point I thought "Oh hell " and started taking one tablet per day again. However the PSA continues to climb a point every three months and is now 0.09ug/L.
Some people would think that it is crazy to use a product that is not approved of by the medical profession, but I think if there is a product that actually delays progression of the disease then why on earth wouldn't I take it. [It would make more sense to find a doctor who would supervise a regular dose of diethylstilboestrol (DES) which is likely the active ingredient of Prostasol. Failing that intermittent ADT (Androgen Deprivation Therapy) would likely have the same effect] I have read that Prostasol has been associated with some clot formation problems and some people take a mini aspirin to counteract that effect. I take a daily Mobic for a bad neck which also has some anticoagulant effect.
When I went to Urology clinic in February the Registrar was surprised that I had not been started on radiation treatment yet. His concern was that my PSA has doubled in less than 12 months, and he said that I should push for it when I go to see the radiation oncologist in March. My ratio of PSA to tumor volume in cc is 2:1 which is not very typical. [It is not clear where this figure comes from?] My highest PSA prior to surgery was 3.3 and the total estimated tumor volume on the pathology report was 1.6cc. Apparently 90% of guys with PC have low grade or intermediate grade disease where the ratio can be more like 10:1 or 20:1. There is a table of these ratios somewhere on the internet but I didn't bookmark it. [I have no knowledge of this table or its accuracy, but cannot recall seeing anything along the lines of what Michael spells out here]
So the ratio of 2:1 means that my total tumor volume now is 0.045cc which equates to 4½ units in an insulin syringe or a moderate size drop of water. That is not big enough to show on any scans yet, so I don't know if there is local recurrence or distant metastases. There are studies which show that patients who have radiation after surgery will do better than those who do not, so I would like to be given that despite the damage that it might do.
When the disease progresses further I will have to try ADT (Androgen Deprivation Therapy). Apparently the hormone treatment fails after 12-18 months for T3b, but I don't know exactly what the prediction is for T3a. [There are no studies I know of that show that this is so]
March 8, 2010 I saw the radiation oncologist at the PA hospital today and he has decided to start my treatment (salvage protocol) in a few weeks. That will run for 6½ weeks. So I would probably have my next PSA 3 months after the treatment is completed and I could post an update after that.
DISCUSSION TOPIC
I haven't seen much discussion of the role that TRUS + biopsy may play in spreading disease from the primary tumour to other sites in the body. [This subject is discussed frequently on the Internet - I posted a summary on the Forum] Typically 12 needle cores are extracted from the prostate gland. The needle tracks leak blood cells for up to 6 weeks as is evident from the slight red tinge in semen for that period of time. [This may reflect Michael's personal experience : many men do not experience this bleeding for this length of time] It is reasonable to assume that if blood cells escape then tumor cells may also escape. It only takes one cancer cell to create a new tumor deposit. [There is no evidence that this is so - in fact quite the reverse] About ten years ago the surgeons were only using about 6 needles.
The immune system has white blood cell lymphocytes termed natural killer cells which have potential to attack cancer cells but it is not at all clear if they will be activated when a few cancer cells migrate from the primary site. When a patient is asked to sign a consent form for a biopsy I don't think he is informed that 12 needles will be used or that the more needles used the greater the likelihood of cancer cells escaping from the prostate. [This may be because there is no evidence that there is a greater risk with more needles. Saturation biopsy procedures use up to 50 or more needles and there is no evidence that this causes any cancer to spread]
Imagine for a moment what would happen if surgeons routinely elected to use 12 biopsy needles for every female patient who is found to have a lump in a breast. There would be howls of protest up and down the length and breadth of the country, and rightly so. When this happens to males there is not even a peep of protest. If a man has one or more nodules palpable on DRE it would only be necessary to use one or two needles to determine grade of disease. Doctors would argue that using 12 or even 24 needles will provide better mapping of disease and greater chance of finding a tiny tumour. However, if the cost of the procedure is spread of disease then it is the patient who loses many years of survival. [As is clear from the entries on this site, very few men have palpable nodules on DRE - hence the fact that they are staged T1c - which is why the biopsy procedure has been increased from 6 to a 'norm' of 12 needles. Studies demonstrate that using 12 needles in biopsy procedures is about the optimum number.]
It is well established in common law that a patient has a right to be fully informed when giving consent. A surgeon can say that it has not been proven that biopsy needles will spread disease but similarly it has not been disproved either. I tend to believe that every patient who is going to have a biopsy is entitled to have some input into deciding how many needles are going to be used. If anybody has any thoughts about this topic that they would like to share, or knows of any good references I would be glad to hear from them.
I had six and a half weeks of radiation fron April to June 2010. My PSA on 25th of August about 10 weeks later was 0.06 which was a small drop from 0.09 in February. It's nice to get any decrease, and I am hoping that the next one in four months may go a bit lower.
Thanks for the reminder to post an update. In Sept 2011 my PSA had gone up a decimal point to 0.04 so I asked the Urology clinic if I could start Zoladex. During the first weeks the side- effects were quite strong with hot flashes, my blood pressure went up, mood disturbance and slight cognitive effects; It's like a whole package. Fortunately the doctor prescribing the treatment mentioned that if I was having a lot of trouble with side-effects then I could go to my GP and get a script for Androcur which would settle it all down. So I did that and it worked. I do get get a mild warm flush at times but really I can drink a mug of tea or coffee any time I like. After 6 months my PSA is less than 0.03 so long may it last. I don't know if it's worth mentioning but the Androcur is an anti androgen. If I'd had any residual interest in sex it is now firmly extinguished. I don't care about that. I have had a pretty good life really, and I just feel grateful that I have two young children who are very loving and I have them with me for a half of every week. Take care everyone.
It is 12 months since my last update and my PSA is still unmoving at <0.03. So that is great and I can have another 3 months of peace of mind. In the last year I got a divorce. I am still working 3 days per week so all is well.
It has been 2 years and 6 months since I started ADT, and my PSA flatlined at 0.3 for that period, however the most recent PSA was 0.4 so I would expect that the next readings will continue to increment upwards. Time will tell if that is so. Best wishes to all who read this site.
In March 2014 the Urology service said I should get a bone densitometry scan as I had been on ADT for a couple of years. The result was a bit of a surprise, the T score was -2.71 and the comments said I had a high risk of fracturing my femoral necks, and a moderate risk of fracturing lumbar vertebrae. So I started on a daily Caltrate with Vit D, and Denosumab (Prolia injection 6 monthly). Otherwise life is good.
Last year my PSA started to increment upwards. In Aril 2015 it was.05, and in July it was .07 and I was told that when there are 2 rises in PSA it indicates that the disease is turning castrate resistant. As I had been having ADT2 (Zoladex and Cyproterone for the side effects) an Oncologist suggested that I cease taking the Cyproterone to see if I might get an anti androgen withdrawal benefit. I ceased the Cyproterone in Nov 2015 and the next PSA was .03 and the following PSA in April was .04. Any slow down in PSA rising is very welcome, but it would only be a temporary effect no doubt.
PSA on 4/7/2017 is 0.04, so I have had 11 years survival so far and been having a good run for the last couple of years. Nothing else to report at present.
PSA on 5/1/18 is 0.04 the same as 3 months ago. Really nice, 3 more months of stress free survival.
PSA stable, very good.
My PSA on 3rd of July was 0.03 so I am very lucky to have that. I counted some numbers on this website. The index shows there are 177 stories of Gleason 9. For diagnosis in 2007 there are 17 stories and 8 are alive (48%) so the kick off is underway. In 2006 there are 11 stories and 2 of us are alive (18%). In 2005 there are 6 stories and 1 guy is alive and well (16%). In 2004 there are 6 stories and there appears to be none alive. The years 2003 and 2002 each have 3 stories and there are no signs of life there.
From that little bit of data it looks like the chances of a G9 reaching 15 years overall survival are quite slim and to live through to 16 years may be quite improbable. Well that is a bit sobering.
[This conclusion may be inaccurate, since the deceased members may have died from causes entirely unrelated to Prostate Cancer. Much also depends on the age at which they were originally diagnosed and their overall health prior to and after their initial diagnosis.]
PSA in July 2020 was 0.03 so I am grateful that it is not going up yet. I managed to lose 8 kg of weight since retiring from working at the end of 2017 so things are good.
I continue to have a PSA every 3 months and some routine blood tests. The last couple of results have been 0.01 for which I am very grateful. There is no apparent cause for the PSA to stay so low other than Zoladex and some regular exercise in the last couple of years.
My PSA has been 0.01 or less for the last 21 months. The only treatment is ADT. I am starting to believe that exercise is another factor which has an effect. There has been a paper on Medscape finding that exercise is providing longer overall survival for breast cancer patients. If it is true for that cancer it may be also the case for other cancers. I do only moderate exercise walking for an hour in the morning four days per week which equals 20km/week. I downloaded a couple of papers discussing the effects of exercise on cytokines and the immune system. Trying to understand Interleukin 6 is a bit of a high bar for my poorly tutored mind. If anybody reads this and is interested in the topic just try searching effects of exercise on cytokines.
The PSA has been dormant for 2 years and 9 months, Nice.
Michael's e-mail address is: michaelshn60 AT gmail.com (replace "AT" with "@")
