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Prostate cancer

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Old 12th Feb 2018, 22:33
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Unfortunately I was diagnosed with prostate cancer shortly before Christmas after they investigated a mildly high PSA (~5). Urologist had a nice quote though - "many men die with prostate cancer, but not many die from prostate cancer". Depending on what they see, treatment can be anything from "keep an eye on it and see what happens" to complete removal of the prostate.
Biopsy sounds bad, but in reality wasn't a big deal - some stings and a sore bum for a few days. Worst part was blood in my 'bodily fluids' for some time after.
They caught mine early, which is fortunate because it's fairly aggressive (8 on a scale of 2-10), two different scans found no evidence it's spread. Treatment plan is hormones for a couple months (already started), focused beam radiation for 5 weeks, then implant of radioactive 'seeds' in the prostate after a couple week break from the external radiation, then a few more months of hormones.
Obviously not something I want to deal with, but the prognosis is very positive.
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Old 12th Feb 2018, 23:38
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That really does sound a belt a braces attack on quite a low PSA. The Gleason? 8, if it is Gleason, is made up of two figures. I don't know why my 4+3 was much worse than a 3+4, but it was that, that made my GP change his mind about 'Watchful Waiting'.


The thing about disasters is finding the light side. When I went to Southend for the Volume Studies, I needed to be Picolaxed. If you haven't been Picolaxed you don't know what you've missed.

Lovely nurse looked at me after about an hour and said, Anything happening?

Nope.

Another hour. Anything yet?

Nope

After about three hours the negative answers bought questioning looks between the staff.

Four hours and I trotted off to the single loo in the 8 bed ward. I feared this moment as I'm a fussy git, and hate loos that are below royal standard.

It was immaculate. Even to my 20/20 vision it was spotless. However, there was an abundance of loo rolls that diverted attention from my by now hurried state. Lots of loo rolls. Piled on the window sill so that very little light could enter. Piled on the top of the cistern. In piles on the floor so that one could not help kicking them asunder. Seated, one did not need armrests as one's elbows were supported by loo rolls. Somehow in this strange moment, I found this funny. Very, very funny.

There's something unique in the human psyche that lets humour soften the brickbats. Being helpless with laughter while Picolaxed is something that is beyond the sternest tests of self control, though it has to be said that one augmented the efficacy of the other.
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Old 13th Feb 2018, 01:49
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That really does sound a belt a braces attack on quite a low PSA. The Gleason? 8, if it is Gleason, is made up of two figures. I don't know why my 4+3 was much worse than a 3+4, but it was that, that made my GP change his mind about 'Watchful Waiting'
Yep, that is the Gleason - 4+4. I think the PSA was only used to 'get their attention' - and one reason why they think they caught it early. it was the biopsy that got the urologist's attention, along with the 8 on the Gleason - I'm reasonably sure is the reason for the relatively aggressive course of treatment. Other good news - and further evidence that it was caught early - was that he took 16 biopsy samples but only one came up positive.
At least for now, I'm more concerned about potential side effects than I am about a 'failure to cure' the cancer. The hormone treatment is already annoying - given the lack of energy and how suddenly easy it is for me to gain weight it must really suck to be female
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Old 13th Feb 2018, 10:31
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Yes, I did not like the sound of the hormone treatment. I opted for just one Brachytherapy and almost literally left it at that. Just sent in the PSA's and got letters to say how delighted he was with the readings. My reading of the man who saved my life was that he never got delighted about anything, but it takes all sorts.

My burden is 'bowel hurry'. I think that's a name he made up. 1 in 500 cases he mentioned casually. Back then that would have made two of us. Tedious, it just sends signals telling me I need to find a loo a bit sharpish. All perfectly normal except for the timing of these rather demanding signals. When I was flying as SLF to Texas fairly regularly, I'd resort to the dreaded Picolax 36 hours before departure. Days, if not weeks, go by perfectly normally but I'm always mindful of loo planning which is a kind of flight planning in reverse.

Having said all this, I'm not totally sure there's not an allergic reaction issue involved since I suspect gluten/wheat of being the main cause of back pain for many years. That's pretty solid science now and the back surgeon agreed. It would take molecular levels of ?? to cause a reaction. So glad all this didn't happen when I was young.
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Old 13th Feb 2018, 14:59
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Originally Posted by Loose rivets View Post
My burden is 'bowel hurry' ... Tedious, it just sends signals telling me I need to find a loo a bit sharpish.
In Australia there is an online national database of public toilets, accessible via the National Public Toilet Map website or by various smart phone apps.

Obviously this isn't terribly helpful in Texas, but I wonder if there isn't anything similar? (It is probably rather "socialist" to Texan sensibilities, but there are some things that governments can do better than anyone else!)
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Old 13th Feb 2018, 22:01
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Well, I'm back in Essex now, and planning my midday trog takes in the wondrous new building that sits upon our Naze cliffs - a monument to lottery money that is quite simplistic in its mandate: you go into a large building with grass on its roof, that cost into seven figures, and take a deep breath. Then you look out of the windows at Walton's Naze. Something you could do before you went in.

However, having sprinted up the 72' of steps from the beach, I know, that at the top, I will have a posh new loo on my list of diversions.

Sometimes, I like humans.
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Old 15th Feb 2018, 07:48
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mr rivets, check your pm

gs
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Old 12th Mar 2018, 11:23
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Since I have been following this thread I thought I would share my experiences here and ask some advice at the end.

My PSA has been elevated at 7 rising to a stable 12 over the last two years but finally my GP and AME agree with me that whilst watchful waiting is all very well, leaving me until I hit 20 was too much a game of Russian Roulette.

I had a 'trace MRI' last November from which the 'Dotarem' agent nearly finished me off with highly erratic heart rates and wildly fluctuating blood pressures for the following 36 hours. I now understand that the underlying ingredient is a toxic heavy metal called Gadolinium that is rumoured to stay in the body. Many people have chronic onward problems after using it and in the States there is a growing legal case to get its use discontinued. Several varieties are already banned in Europe with Dotarem being one of the few left in use. Tip No1 : Avoid trace MRI's if you can....

The results came back as I suspected with a couple of lesions, one relatively large in the lower section and another smaller above. PiRad 5 and 4 respectively. These required biopsy so in January I was offered a targeted trans perennial one. This in simple terms is a step up from the TRUSS 'Dynorod' fishing trip normally offered but is done under a general anaesthetic with several needles placed through the area between the balls and the bum. I have to say that since a close friend called his TRUSS experience the most pain he had ever experienced in his life I count myself lucky that my discomfort was limited to imitating John Wayne walking for 24 hours, and even that was more for comfort than necessity. Tip No2: Ask for a TP biopsy if you can get one.

Sadly, again as expected the results came back as Gleason 7 (4+3) which seems the industry standard to have to do something about it. As my last PSA was 12 a bone scan has now been completed and that luckily is clear.At last some good news!

Now it's decision time between the sword or the death ray. My urologist is practically pushing me through the operating theatre doors to have surgery. So much so I presume my local health care trust must be running a BOGOF offer! I am 64 and in reasonable health so of course the preference is to recommend a one stop solution with the least risk of complications.

I am seeing the Oncologist next week to discuss HT/RT and in particular the use of SBRT in the form of Cyberknife. This replaces the normal long period of short dose radiation with five days of tightly focused high dose. The benefits seem to be slightly better success rates with lower side effects in collateral damage.

To be honest, whilst I see all the benefits of surgery, especially at my age I am viewing it as a 'lucky dip' that hopefully will clear out all the cancer but in no way can guarantee to do so. I am leaning towards the more scientific approach of starving the cells through HT before blasting them with RT. Both have equal success and failure rates (surgery maybe ten per cent better) but as post surgery all that can be offered is RT plus permanent HT I feel I might as well get on with it and hopefully try to catch all that's lurking in any positive margin outside the prostate. At least post HT/RT there is cryo and HIFU to look at before permanent HT.

My first question though is this. I have been flying for nearly fifty years and in jets for thirty five. Contacting my airline I have been sent my last years radiation record which would indicate that I have probably ingested between 2-3mSv per year over ground radiation. Has anyone any experience of an Oncologist refusing or discouraging treatment because of that? When I look at the amount of radiation planned by either traditional or SBRT routes a previous intake of around 90mSv in my life seems irrelevant.

Second question; I have done a lot of reading and study to make my choice on treatment. I have come across a lot of web sites with people who say they have had complications, infections, rectification procedures post removal. In other words I can find plenty of people online who would say they regretted having a radical prostatectomy. Apart from one bloke with itchy tits I cannot find anyone, anywhere who regrets having HT/RT even though the side effects were unpleasant. Of course one only gets to read about the cases that have gone wrong but my AME is favouring RT and frankly so am I.

However, any thoughts and advice would be welcome right now.

Best Regards.
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Old 12th Mar 2018, 13:43
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Thumbs up TURP vs. Other Treatments

Dear BoeingBoy,

I am not a physician so I am unprepared to give you professional medical advice. I have plenty of hospital experience, however, having worked as specialized technician at Crawford Long Hospital, the teaching facility of Emory University in Atlanta, Georgia, U.S.A. The oncology wing housed a number of Delta pilots who had undergone a full prostatic resection (some via TURP, others via abdominal incision), so I don't believe your exposure background radiation would preclude further targeted radiotherapy, pre- or post-surgically. As an aside, one wonders if your vocational dose levels may have been contributory to CA's development.

Funny that you mentioned "John Wayne Walking" and the human perineum. Should you need a laugh, check out my post to Fliegenmong in the thread called "A Delicate One". It's in this Forum.

I know I share the hopes of many other PPRuNers: we wish you a complete and painless cure and recovery!

- Ed
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Old 12th Mar 2018, 14:18
  #30 (permalink)  
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Thanks Cavuman.

I too wondered if after 26.5K hours my radiation was catching up with me. In one way I am glad that it is PCa that I'm dealing with rather than something more aggressive. There's always something to be positive about.
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Old 12th Mar 2018, 18:40
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My GP says, at 73 I need a PSA test only once each year, I would have thought once every six months would be better. How do others feel on this thanks, all test results so far have been normal?
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Old 13th Mar 2018, 12:00
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Nothing to stop you asking for a full blood MOT on an annual basis followed by PSA every six months if that is what you want for peace of mind.

I know that whatever route I follow I will be making a pest of myself at the GP's keeping up with the tests, along with the bowel cancer screening program too.

But then being a pest is something I'm rather well known for........
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Old 13th Mar 2018, 18:02
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BoeingBoy

I have just been through which I believe you might be starting,also it sounds like we have had the same career,might even know you. How do we get in touch.
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Old 13th Mar 2018, 23:20
  #34 (permalink)  
 
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I had Brachytherapy at age 56, almost 16 years ago.
My PSA was elevated and my Gleason was getting to a worrisome level, my Urologist wanted to cut everything out initially, but I got a second opinion and after waiting about 3 months for the Brachytherapy (and my PSA rising) I had the Brachy.
I have had no problems ever since, and my PSA's are at the margin of detectability.
Lots of luck.
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Old 14th Mar 2018, 13:45
  #35 (permalink)  
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Thanks everyone. I am glad to add that my bone scan has been returned as clear and I am staged at T1C which is better than I'd hoped for.

Met the surgeon yesterday to discuss that route but will be meeting the oncologist next week who I suspect will get my custom.

BUS1TER I have PM'd you.
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Old 14th Mar 2018, 17:27
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Prostate cancer killed a friend of mine in about three months. As I'm over 60 and so many reports of it have been in the news, I've finally booked a exam next week. My fear of cancer is greater than that of a doctors finger up my ass!
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Old 14th Mar 2018, 20:40
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BoeingBoy, the problem with complete removal is the complication rate is relatively high. Which is one reason I'm comfortable with my Urologist recommendation to do hormone and radiation which have a low risk of complication (another is that both my Urologist and my Radiation Oncologist come very highly recommended by other doctor types).
Right now, everything that has happened has been pretty much what I was told would happen. I go in later today to get my prostate 'mapped' for the focused beam treatment that should start later this month (I got gold 'markers' inserted in my prostate about a month ago - which along with the mapping will be used to target the beams).
For now I'm remaining optimistic of a good outcome - and the doctors keep using the 'cure' word which helps greatly.
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Old 15th Mar 2018, 03:34
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I had mine removed 5 years ago in France using robotic surgery . The Da Vinci robot to be precise . 3 days in Hospital . All back to normal within a couple of weeks except I now only shoot blanks . The top tip when considering this route is that the surgeon needs to be experienced . I cannot stress enough the need for annual PSA Check over the age of 50 or 40 with family history . Best wishes to all .
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Old 15th Mar 2018, 08:36
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Rusty. Don't worry about the finger. It's not that bad, and if you need a biopsy ask for a transperrienial one which is much more comfortable, if only for the fact that you're out for the whole procedure. It's also a lot more accurate.

tdracer: I think we are working on the same lines. I have one positive core close to the periphery which the surgeon said would increase the chance of me having a positive margin (and therefore a higher chance of failure) so I figure zapping with a little extra spread to pick anything lurking outside the capsule seems more sensible.

Good luck to you both with your treatment.
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Old 22nd Mar 2018, 18:29
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Just to answer my own question posed on the previous page....does a lifetime of long haul prevent or jeopardise your treatment with RT? The answer is no. The Oncologist looked at my intake and likened it to living in Cornwall versus Scotland for most of my life.

I have now started the HT/RT route and am researching the use of SABR radio applications and also the use of rectal spacers.

Finally someone will get to do to me what a lot of FO's could only dream of....
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