Prostate cancer

[testpanel]

So all,

My brother in law just had his PSA results back; 55 (yes, i did not skip a ", " or a "." .

Of course he is "in the system" with all kinds of researches and looking into possible treatment. (they are still investigating if the cancer has spread over the rest of his body/organs).

Any one of you have ever heard/experienced of this high value of PSA and what to expect?
I know there are some medical experts reading PPRUNE, maybe they can point me to some new treatments or any info.

This case is in (western) Europe.

Any info is welcome (also via p.m.)

Thanks for any help.

[cavortingcheetah]

I stand ready to be corrected on this because my medical knowledge is mediocre, gained by experience at the sharp end.
I wouldn't get too wound up about the PSA number. As you know, the important thing is going to be whether there's been a metastasis form the prostatic capsule.
I should have thought that his urologist would do CT scan of the prostate, a lung X ray and a nuclear bone scan,
His urologist might well take a biopsy sample, perhaps a transperineal or targeted biopsy rather than the cruder anal biopsy. This will produce the well known Gleason score.
All of these results will be put into the melting pot and a determination as to treatment will be made depending on the likelihood or actually determinable escape of not of cancer cells from the prostatic capsule.
Good luck to your brother in law. It's all a most terrifying journey he's embarking on.

[Shack37]

There is an existing thread "Bugger I´ve Got Cancer" which contains much information from people in various stages of diagnosis and treatment of various different forms of cáncer including Prostate.
Best wishes to your BiL

[421dog]

I think that's in Jet Blast and not in Medical. There's masses of good information in there.

[gingernut]

There is a urologist on here who may be able to give exacting advice (?obsgraham)

Difficult to go off just an isolated reading. They can be sometimes raised after examination of the prostate, or sometimes in a UTI.

Such a raised level shouldn't be ignored however.

[obgraham]

Wrong gender, gingernut -- none of my patients even had a prostate!
Sounds to me like the person under consideration has access to good quality care. We all wish him well.

[gingernut]

Apologies Obgraham.

I take it you are the guy/lass who can paper the hall and stairs through the letter box :-)

Back to the OP, the result needs following up.

[BoeingBoy]

I am a bit late into this thread but being a subject close to my own heart, here's the CAA's protocol on the subject.

Basically, once on the road to recovery from radical treatment the prospect of returning to flying is good.

CAA Prostate Cancer protocol (https://www.caa.co.uk/uploadedFiles/CAA/Content/Standard_Content/Medical/Oncology/Files/Prostate%20cancer.pdf)

[bafanguy]

High-Intensity Focused Ultrasound (HIFU) gets mixed reviews as to its effectiveness. We don't hear all that much about it here in the USA but a local urology practice is mentioning it in their literature.

As usual, Google offers a confusing variety of opinions, professional and otherwise.

Anyone have experience with it ? Radgirl ?

[No, I don't need it but know a growing number of men who have to make treatment choices, from a bewildering menu, upon diagnosis. And at my age, every PSA is another potential chance to join them.]

[Radgirl]

HIFU is being used in a number of centres in the UK and those I know of involve excellent mainstream urologists. It consists of placing a probe in the rectum and using a guidance system from a previous MRI to direct the beam. Takes 40 to 120 minutes, normally under anaesthesia. They used to catheterise patients for a few days, but this is now less common and patient goes home 30 minutes later.

The great benefit is the non invasive nature of the treatment compared to radical prostatectomy. There have been a couple of papers suggesting this is a good option for some patients. Hashim Ahmed at Imperial Hospital London reported 172 day case procedures noting low complication rates and good results as follows:

0.7% of patients had incontinence (requiring pads), 30% erectile dysfunction and none developed a rectourethral fistula or bowel dysfunction. Overall, there was no evidence of disease in 92.4% after one HIFU session, at a mean follow-up of 12 months. Focal therapy using HIFU might offer the greatest potential in reducing morbidity further

My understanding is that the machines were nor FDA approved and so could not be used in the US - they were bringing US patients to the UK for HIFU not long ago.

The issue seems to be that the treatment recommended depends to a degree on the interests of the individual urologist - some urologists only do robotic prostatectomy, others only do HIFU. The advice must be early diagnosis with MRI and template biopsy followed by cross examination of your urologist as to the risks and benefits of the various treatments, but if my tumour were suitable I would prefer HIFU to surgery or brachytherapy, if I had a prostate !

[bafanguy]

Radgirl,

Thanks for the info. They must have some machine they can now use in the US cuz our local urology practice is advertising they use HIFU but only mention one doc in the group who does it.

Considering how noninvasive it is, it likely couldn't hurt to use that as an opening treatment and see how it goes ? You can always ramp up from there if it doesn't ?

It's the biopsy process that would keep me up at night. Here they use some sort of mild oral medication to fuzz you out a bit vs a colonoscopy-level "knock-out".

A friend had three rounds of biopsy as they kept getting only questionable cells. Three biopsies...86 snips !! That's like pullin' yer brain outta yer nose !

Hit pay dirt on round 3 so he had a long series of conventional radiation and, for now, is fine.

Makes a 70 y/o guy start looking over his shoulder to be sure the Fickle Finger of Fate isn't catching up with him (punt intended).

[cavortingcheetah]

It is now six weeks since the original post. Even in a slow old world there should be some update. It is not particularly kind to speculate based upon a six week old blood test, even if one might be a patient surgeon.

[Radgirl]

Thanks for the update Bafanguy - it was only a question of time before the FDA approved one of the devices

The template biopsy involves a navigation system to target the biopsies from the imaging obtained at MRI. It is a large number of large needles and it is essential the patient is completely still

In the UK this is done under a GA not the IV sedation used for colonoscopy and certainly not oral tranquillisers. The US has historically done quite horrendous procedures awake, in part due to a lack of anesthesiologists but also because Americans had a real fear of anesthesia having been told the army staff sergeants who administered the newly introduced pentothal on US casualties at Pearl Harbor killed more GIs than the Japanese.

However that was yesterday. Today I would tell anyone having this procedure to have a general anaesthetic both for their own comfort and for accuracy. No ifs. No buts.

[captainsmiffy]

I think that's in Jet Blast and not in Medical. There's masses of good information in there.

Or, you might say, ‘theres good information on masses in there....’!

As a 3 year pancreatic cancer survivor then I guess that I am entitled to joke about it!

[cavortingcheetah]

Gallows humour gets one through many tribulations!
May your fortitude continue!

[captainsmiffy]

Spot on....! (Pun intended for cavortingcheetah.....)

[MaximumPete]

Be positive!

A sense of humour certainly does help and I was fortunate to get the all clear from a biopsy.

I found my GP and the urologists, with one exception, very positive and reassuring.

[Loose rivets]

I thought Canada was big on HIFU, but my encounter with Prostate cancer was at least 8 years ago.

I got a Gleeson 4 + 3, the worst way around and was on the borderline for Brachytherepy. But just scrapped in.

The biopsy was 12 stings, the only anaesthetic being local via the same route.

They said it was like being stung by an elastic band. And that was about it.

The "Volume studies" needed a general, as did the insertion of the seeds. (made in Canada.) I had no real after-care. Isn't that strange? Just let them know the PSA a couple of time.

Bad things. I did get some tendancy towards 'Bowl hurry.' All normal, except I don't get very long warning times. Long flights and I zap myself with Piccolax and time it so I've stopped pooing by the time I'm on the aircraft. ;)

Brachytherapy is big down under I'm told. In NZ, anyway.

Radgirl.

I'm very concerned about the use of anaesthetic. Given people don't seem to know exactly how it works, I wonder where the boardline is between people of my age who should not have it if possible, and folk that are going to be unaffected. I had a long briefing from my son about new drugs and the way they work, and the way they affect the synapses. Quite astonishing what they're learning now, but I just have a niggling doubt we get away with things Scott free.

An interesting subject.

In haste.

Oh, just a mention about my viewpoint (no pun) I had back of the eye surgery with local, also two carpal tunnel ops. I was allowed to look into my hand,.

[Radgirl]

Thanks Loose Rivets

They make you tough in Canada! I take my hat off to you. Suffice it to say that I have heard from many men how painful it was. We can anaesthetise the eye with various local anaesthetic blocks so we rarely give a general anaesthetic, and limb blocks do the same for the hand, but in the case of this biopsy it is usually just infiltration and not as effective

You are absolutely right that we have been ignorant about how anaesthetics work, but we are now learning fast. However the general anaesthetic you would receive for this is very very safe and the expected outcome is no effect of more than a few hours. I really dont want people to go through distressing and painful procedures out of a fear of longlasting affects that dont exist for most cases. And 78 is not old nowadays. We dont stop people having anaesthetics on the basis of age.

Brachytherapy is another treatment as is Cyberknife. Radiotherapy does have side effects. That is why it is important to ask which treatment can be used, the risks and the benefits.

[cavortingcheetah]

Here's a little light hearted reading on brachytherapy. It's quite popular in South Africa although you'd need to make sure that the man who does it knows what he's doing. A radiation damaged bowel is a possible consequence of a less experienced surgeon and that can lead to permanent anal leakage.
I would draw the attention of those considering this treatment to the tests that are commonly carried out down there before embarking on this course of action.
I wonder if they are standard practice everywhere?
It is, of course, a relatively expensive treatment, radio active pellets are not cheap and have to be transported too.


Brachytherapy - I have cancer now what? (http://www.brachytherapy.co.za/evaluating-the-cancer.html)


Here is a little blurb from a brachytherāpic patient. Peter Harden practises at the Donald Gordon Hospital, a teaching hospital, while Van Niekerk practises at the Sunninghill.

https://sites.google.com/site/ianbrachytherapy/home/my-story

A little digression used as a means of bringing an excellent surgeon's name to the attention of anyone who is interested.

https://www.netcare.co.za/News-Hub/Articles/articleid/86/new-hope-for-sa-men-suffering-from-the-symptoms-of-a-severely-enlarged-prostate

[Loose rivets]

Radgirl, in actuality, I've only been to Canada once. The family travelling from CA got stuck in snow for 11 hours, while we arrived tired from southern Texas. It was all to show the g-children what snow was like.

There was none. Christmas, and not a flake. We drove for hours before seeing ski slopes with 'God, give us snow!' emblazoned on roadside billboards. Not a good sign. :rolleyes:

When we got back to the heat, it had snowed for the first time in 109 years.

My biopsy was done in a Texas Christian hospital by a lovely doctor that waived his fees for this beleaguered Brit. I paid for the lab work. I was over 60 when this all came about so could head back to the UK for treatment. I saw the specialist about 15 hours after landing.

My GP had recommended Watchful Waiting before being told the Gleeson. My wife did the research and wheeled my bewildered state into an interview with a nice specialist nurse in an Essex hospital. I was then driven to Southend to meet Mr Lodge, one of the (then) 4 UK specialists at the teaching hospital.

I got told not to be late for the actual procedure because of the aforementioned cost. Miss the time and they have to be thrown away.

Talking of which - I wasn't allowed to cuddle my grandchildren for a while, and I could not be incinerated for a year. Good job, as I wasn't dead. Radio iodine 125.

The upshot of all this was that I was back to my bouncy self just days later . . . fully functional and eyeing the Rivetess like a rejuvenated puppy. Which is possibly one of the reasons she moved 600 yards up the road.:* Life is so strange.

Brains:

I never quote my professor son as he takes his work very seriously and I might fuzz the details, but we do talk about brains now and then and a recent discussion lead me to a post on a cosmology forum today. Quantum entanglement in brains. I muse over the fact we have c 86 Billion neurons giving multi trillions of possible interconnections, and now it's postulated that there may be some 'action at a distance between the transmitter's electrons. This would up the anti by many orders of magnitude and leave us never being able to map conciousness. I had wondered if the synapse neuro-trasmiters might be encoded, but that wouldn't be in the same league as physically unconnected messages crossing the brain.

I wouldn't have given it a second thought if it hadn't been one of Sir Roger Penrose's hobby-horses some years ago.

https://www.theatlantic.com/science/archive/2016/11/quantum-brain/506768/

[BehindBlueEyes]

Anyone had any experience of the success rate of HDR Brachytherapy? 71 YO Dad diagnosed with Gleason 9/PSA 45/no symptoms 3 years ago. Locally advanced. Clear bone scan. Had HDR + external RT + injected Zoladex (course finished last September) Last PSA in October 0.02 but due for a follow up PSA next week. I know he’s quite anxious in case the cancer hasn’t been subdued.

[Loose rivets]

Having reread the question I'm now assuming previous treatment of a temporary Brachytherapy. I'll leave my answer as it was just for general information but I don't know if one can have seeds after HDR temporary.

A few years ago I was on the acceptance borderline with a Gleason 7, made up of 4 - 3 (the worst way round) This may of course have changed.

I'm not sure what the effects of previous treatments may be.

It's worth noting, and again some years ago, after Brachytherapy the removal of the prostate is not possible, so decision making could be based on the reduced options left after previous treatment.
Gleason readings are notorious for causing stress and even morbidity in patients. So much so that stopping that routine test was considered in the UK for a while. Personally, I thought that to be foolish, but at 71, and contained, the slowing down of the growth-rate gives some comfort, especially when closely monitored. However, I'd want advanced scans, with an MRI at minimum.

I was lucky, I had an MRI for lower back prior to back surgery. The surgeon was aware of the previous problem but perhaps always looks for cancer in older prostate patients as the back is where it seems to go.

[BehindBlueEyes]

Many thanks for your reply Loose Rivets.

Dad was told at diagnosis that even if nothing was done, it wouldn’t be an issue for 5 - 8 years which seems strange seeing it was already ‘locally advanced’

Yes, it was temporary brachytherapy and at the time, the specialist was pretty confident that it had all been zapped but recommended the Zoladex for 2 years as belt and braces. Although dad says the nocturnal visits are much reduced, he still gets up a couple of times some nights so I think he’s concerned that there might still be a problem. I’ve read online that Brachytherapy in itself can cause some long term urinary issues which I hoped should reassure him.

Interesting to know also that at 71, the growth, if it’s still there, will be slower. I had no idea so many thanks.

[tdracer]

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.

[Loose rivets]

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. :ooh:

[tdracer]

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 :uhoh:

[Loose rivets]

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.

[nonsense]

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 (https://toiletmap.gov.au/) 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!)

[Loose rivets]

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. :bored:

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.

[good spark]

mr rivets, check your pm

gs

[BoeingBoy]

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.

[cavuman1]

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! :ok:

- Ed :)

[BoeingBoy]

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.

[kaikohe76]

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?

[BoeingBoy]

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........ :ok:

[BUS1TER]

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.

[fleigle]

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.
f

[BoeingBoy]

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.

[rusty sparrow]

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!

[tdracer]

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.

[Driver airframe]

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 .

[BoeingBoy]

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.

[BoeingBoy]

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.... :uhoh::E

[rusty sparrow]

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.

<snip>.

Quick and simple, while I talked to the doctor about religious cults! No problems, but as a friend died in months from prostate cancer a few months ago, it's worth that physical check.

The blood test seems to be worthless - provides false negatives and positives.

[tdracer]

The blood test seems to be worthless - provides false negatives and positives.
Not my experience - the finger check didn't reveal anything unusual, it was the elevated PSA that sent me to the Urologist for a closer look.
Agree that the finger check is no big deal - some of the other stuff that's gone up my butt since is far worse. I mentioned to the Urologist that he kept doing things unpleasant things to me - he responded that he'd be a little worried about me if I didn't find them unpleasant...

[Loose rivets]

The finger thing brings back a memory. I was getting worried about flow and had a wellness check in a Texas clinic. PSA ~8.5 I went to another clinic and paid for a digital which included pressing first the left side and then the right. Ejected fluid was gathered for analysis.

Left side. Done. Right side, press, press, "Oh. No need to carry on."

So obvious was the bulge that the doctor simply abandoned his routine. I was then blessed with a doctor in San Antonio who did the biopsy for only the cost of the lab work. It was in a Christian hospital, and the doctor upon being told I was uninsured said, 'when you have been blessed as I have, I believe in spreading the joy/good luck' something like that.

He offered me the DaVinci machine at reasonable cost $22k IIRC, but by then I was again entitled to British medicine but it was more the long term issues that influenced me to head west. As I've often mentioned, in the event I elected to have Brachytherapy, being on the borderline at a Gleason of 4+3.

I would never try to influence anyone on which path to take. It is after all a matter of life and death. The decision has to be made on a combination of statistics and technical specifics for the individual. Not the easiest of choices.

[cavortingcheetah]

If it can be determined without a reasonable doubt that the cancer is contained within the prostatic capsule then the decision seems to turn on the possible retention of some sort of sexual function.
As between Brachytherapy and Prostatectomies, in general you've more chance of performing sexually following the former than the latter.
As between Prostatectomies, you've got more chance of performing sexually following a nerve sparing (Da Vinci) procedure than a radical procedure.
Problems can arise with the Da Vinci procedure should there be previous scar tissue as from an appendectomy or a nephrectomy/nephro-ureterectomy. Scar tissue makes fine surgery tough work. In such cases it is possible that the surgeon will have to make a theatre decision to convert the nerve sparing procedure into a radical one. An example of this, by his own account, is Andrew Lloyd Webber, who went into a Da Vinci procedure intending to retain sexual function after a nerve sparing operation only on awakening to discover that the finest team in Britain at the London Prostate Centre under the direction of Professor Richard Kirby, had been unable to spare his sexual function.
There is one final small but significant point. The end of a man's capability for sex will often affect his partner's psychological well being and sex life, depending on concepts of old fashioned virtues of faithfulness. To embark upon a course of action that will likely deprive one's partner of fulsome sexual gratification makes a treatment decision, insofar as is possible, a two person one. Involvement of one's partner is an important part of the road to successful recovery from prostate cancer and this is true no matter what the actual physical outcome.

[BoeingBoy]

Every professional I've consulted so far, from Urologist, Surgeon, Oncologist and specialist Nurses have all said the same thing.....decide what treatment you want with you heart and nothing else.

I have a friend who is going towards surgery whilst I am now on the HT/RT route. He wants his treatment up front and done in one go. He is happy to take the next twelve months getting over it and hopefully regaining continence and sexual function.

For me the research I've done seems to indicate a large percentage of complications are common during and post surgery, with infections, bleeding and urethra clip movement or failures. Of course most are successful and I am only reading about the abnormal cases, but having spoken to, and read about people who had surgery a lot said they might have not gone for it had they taken longer to think things through.

A lot of men rush into surgery because they are keen to lose the cancer and get things over with quickly. Choosing surgery for emotional reasons seems common. However what many are not told about is the chance that whilst the cancer cells may not have metastasised into the lymph nodes or bones some cells may have escaped into the surrounding tissues of the bladder, rectum or pelvic floor. Unless visible to the surgeon these will not be dealt with by surgery and will cause a 'Biochemical Failure' (or recurrence) in the following two to five years. That will mean returning for the HT/RT treatment that the candidate tried to avoid in the first place. My Oncologist puts that risk at about 25% for men with intermediate cancer (G7 4+3).

For me it just seems more scientific and logical to first starve the cancer cells by depriving them of the testosterone they are feeding on and the zap the little sods with RT or Brachytherapy which should also include a small spread to take care of any 'positive margin' that might be lying around the surrounding tissues. It's not fool proof and there is a similar chance that a recurrence could occur but it does seem that the chances are a little smaller.

One thing pushed to surgery candidates is that post RT salvage surgery won't be possible. Whilst that has been true in the past it's now becoming a little more common as RT becomes more accurate. So it's one more myth to debunk.

Post RT you also have Cryotherapy and High Intensity Focused Ultrasound technologies available along with good progress being made on the genetic research front especially using RNA. I believe only the delivery method is holding that up.

I would not urge anyone to go for my choice, or to go for surgery. It must be what appeals to you as an individual but the one thing I would say is to do your research and find out as much as possible about the path you favour before you choose. Too many are pushed towards surgery as a quick fix and as a one stop solution but it's not that simple.

The one thing I have found is that I can locate plenty of posts on forums saying 'I wish I hadn't rushed into surgery' but I can't find one that said 'I wish I'd never had Radio'.

[cavortingcheetah]

I enjoyed that post. Research is a key element. I have met men whose brachytherapy surgeons have left much to be desired. The consequence of that for the brachytherapy patient has sometimes been permanent anal incontinence. The selection of the man who irradiates you is just as important as your choice of scalpel operator. If your biopsy is a butcher job, you are not going to permit that same happy hacker to deprostatize you, are you?

[MaximumPete]

Google prostate cancer UK and there's a very good website run by a charity.Tried posting link but it wouldn't work!

DON'T be shy, everyone I've met in the course of investigations has been incredible, putting me at ease and explaining everything clearly as I'm only a retired pilot.

MP

[BoeingBoy]

Prostate Cancer UK Web site (https://prostatecanceruk.org/)

I can vouch for the good support this charity gives. An excellent help and chat line along with personal contact if you want it and a forum (You'll find me under the same username there).

[thing]

I've had a PSA up to 17 (it's 8.6 at the moment) and have had MRI and biopsy with nothing found so a high number isn't a death sentance. Regarding the biopsy it really is nothing to worry about. I had the local up the rectum and as already mentioned by a previous poster, it is just like having a rubber band thwacked against your skin. They do ask you to pass urine before you go home to see if everything works but I was home mowing the lawn an hour after having it done.

The finger up the rear reminds me of the old joke about the guy who goes for a rectal examination.

'Where shall I put my underpants doctor?'

'Just pop them over there next to mine.'

[beamer]

When I was still working, I used to find that on nightstops, I would be going to the loo on multiple occasions through the night - not a problem during the day. Add to that a few dribbles and a lack of libido ( or was it opportunity !!! ) and the mass of information regarding PC in all forms of the media, well lets just say it set a few alarm bells ringing.

A trip to my GP surgery resulted in a blood test which resulted in a low PSA reading (1.6) and a recommendation to come back in 12-18 months. Second time around the reading was fractionally higher - nightime frequency generally 0-1, maybe 1-2 if I had been drinking until late in the evening. Third time around ( last week ) a reading of 2.2 but with no apparent prostate abnormality from the finger up the bum test. At the docs suggestion, I am now on one tablet a day (Contiflo XL) which is designed to 'relax' the prostate which may in time reduce any enlargement - we await the side effects which may include tiredness, dizzyness and reduction in a certain bodily fluid ! Of course all these drugs come with the standard warnings associated with corporate liability paranoia; I well remember the ads on US television which promoted the likes of Viagra only to be followed by a terrifying list of possible consequences !!!

The simple point is this...its a bit like de-icing, if there is any doubt then there is no doubt - get it checked.

[tdracer]

The one thing I have found is that I can locate plenty of posts on forums saying 'I wish I hadn't rushed into surgery' but I can't find one that said 'I wish I'd never had Radio'.
I think one thing that gives people pause about radiation treatment is the long term consequences of exposing your body to high doses of radiation (at least that was the case for me). So I asked the Radiation Oncologist about the long term threat that the radiation cancer treatment might give me cancer in the future. His response was interesting and not something I'd heard before.
Basically (and this is simplified from what I'm sure was a dumbed down answer), while there is a risk that radiation treatment can cause cancer in the future, it's low. The reason is that when hit with high dose radiation, the cell knows it's damaged and will try to repair the DNA. When hit by low dose radiation (e.g. radioactive fallout), the cell damage is subtle enough that the cell doesn't know the DNA is damaged - hence a significantly higher risk of future cancer developing.

[cavortingcheetah]

One of the common side effects of the drug Tamsulosin, the main ingredient in Conti Flo, Flomax etc, is retrograde ejaculation. This occurs when the bladder sphincter muscle does not contract before ejaculation thus leading to a discharge of seminal fluid into the bladder instead of its wending a merry way down the urethra.
Try not to think about that when engaged in bedroom activities. It's somewhat disruptive to man vibes. It might help to regard the process as a primitive form of birth control known in the appropriate parlance as coitus saxonicus. This was possibly invented by the inhabitants of Wessex shortly before the Norman conquest and the introduction of french letters into the UK.

[BoeingBoy]

So I asked the Radiation Oncologist about the long term threat that the radiation cancer treatment might give me cancer in the future. His response was interesting and not something I'd heard before.
Basically (and this is simplified from what I'm sure was a dumbed down answer), while there is a risk that radiation treatment can cause cancer in the future, it's low.

The general opinion is that there's about a 5% chance of consequent bowel or bladder cancer within about five years post RT. It seems to be linked to the amount of spread outside the prostate capsule that the machine is set to give. The less accurate the focus, the more collateral damage done to surrounding tissue. Some spread is desirable in top end intermediate or high risk cancer to mop up any positive margin of cells that may have leaked out. To put it in context the best machines usually operate up to 5mm of spread with stereotactic machines like Cyberknife operating down to 0.5mm. That's great if you know all the cancer is in one place and in the centre of the prostate but if (like me) there's some lurking near the edge it's best to have a general blast around.

This equals the same 5% chance of never regaining continence post surgery.

The one thing all my research has shown so far is that there is no easy ride through prostate treatment. You have a choice of two lousy journeys. You just choose which is most palatable to you.

I had to use Tamsulosin prior to the transperrenial biopsy. Apart from making me feel lousy and aiding flow rate it didn't seem to have any effect on frequency or sexual activity. Despite the side effects in the leaflets, every man is different.

[cavortingcheetah]

Is it usual in Britain to have a prostate MRI, bone scan and chest Xray between a positive biopsy result and treatment?

[BoeingBoy]

The usual route in the UK has for many years been DRE. PSA. TRUSS Biopsy. MRI. Bone scan (if PSA is over 10) and then treatment.

This has resulted in a lot of men being rodded and radiated unnecessarily (both in the UK and USA) so there is a move now to do the MRI before the biopsy and to use the Targeted Transperrenial method of biospy to provide greater accuracy.

One thing to beware of is that some hospitals insist on using a trace agent to enhance the MRI. This invariably contains a toxic heavy metal called Gadolineum which is supposed to be flushed out through the kidneys. (Kidney function is checked first) However there is growing evidence that it doesn't all come out and that some remains lodged in muscles and the brain. The consequences of that are unknown at present although a lot of patients complain of multiple problems. The medical profession is burying its head about it but certain types of agent have now been banned in Europe and the FDA is moving toward accepting that they can have serious consequences. If you are offered a 'Trace MRI' ask if you can avoid it until further evidence comes to light.

[Driver airframe]

Some good info here . 100 % agree best biopsy for accuracy and no pain is Transperrenial. Assuming the MRI scan indicated the cancer is contained within the capsule , 7 + Gleason score , good overall health etc removal should be seriously considered .Bracotherapy means for practical purposes surgery is not an option in the future .
As far as Surgery is concerned Robotic is a no brainer . The best . However the Surgeon ideally needs to have done a minimum of 200 + operations / procedures .
From personal experience I had a 3 day stay in hospital after surgery in France . With a course of physiotherapy post op when the catheter came out after 8 days pissing near normal along with erectile function the same time ( Ciallis had been prescribed) . This is for info only and I am in no way medically qualified to give advice . Best of luck to all .

[beamer]

Just an update on my use of Contiflo which was prescribed last week. Six days in and no noticeable change in frequency ( early days I know ) but the side effects are taking their toll. Feeling knackered, aches and pains, headache, feeling dizzy and nauseous. I think for the time being I may put up with 1-2 nightime visits and feeling well rather than this little lot.

[BoeingBoy]

Hi Beamer,

Who would have thought we'd wind up chatting here instead of our old airline forum. Hope you are well despite your issues.

Contiflo/Tamsulosin seems to be very popular with the quacks to promote a good flow rate and seems to get good reviews for that. However, like you I found it did nothing for my frequency issues and just left me feeling nauseous and unwell. Luckily I only had to take it for the fortnight surrounding my TP biopsy.

Have you considered trying Urostemol? It's a herbal preparation containing Pumpkin seeds and Saw Palmetto oil. Boots and Sainsburys sell it in capsule form. If you find it works for you then you can always do your own thing with herbal supply shops which cuts the cost down. It does seem to get good internet reviews for those seeking to reduce their frequency. I've been taking it for a year or so and found it helps a little although cutting back on the caffeine and alcohol helps too.

Funnily enough if I'm planning a day out where finding a loo might be an issue a bacon butty has an almost miraculous effect, transforming what is normally an hourly visitation rate in the mornings to three hours or so. Must be something to do with salt intake I suppose. Either that or the brown sauce has miracle properties... ;-)

Good Luck.

[Bruce Waddington]

Hi All,

I've been out of the flying business since 2010 but have been in the prostate cancer business !

I won't bore you with the details, other than to say I have been cancer free for over four years, but will recommend an essential read to those of you who have been diagnosed with prostate cancer and are trying to decide on what type of treatment will work best for you and your family.

Dr. John McHugh is a urologist from the USA who was diagnosed with prostate cancer several years ago. After completing his chosen treatment he wrote a book about the experience. It was not so much about the cancer itself but was very focused on the procedure he used to reach a decision regarding the type of treatment he would undergo.

He called his book 'The Decision'. After my wife and I read his book we used his decision process to make a choice for treatment that met our needs. We opted for robotic laproscopic removal of my prostate.

There is so much information available for the newly diagnosed man regarding treatment options that things can get overwhelming very quickly. Dr McHugh's book will lead you through the decision making process to reach a decision that takes into account the type of prostate cancer you have, any underlying medical issues you have and what you and your significant other want to see happen at the end of this journey.

Here is a link to his book;

https://www.forewordreviews.com/reviews/the-decision/

And here is a link to his website;

The Decision: Your prostate biopsy shows cancer. Now what? (http://theprostatedecision.com/)

best regards,

Bruce Waddington

[beamer]

Hi BB !

I gave up on Contiflo as, like you, it made me feel unwell and nauseous and within 3-4 days I was back to normal.

You mentioned Urostemol, well I tried that and it did not seem to make a great deal of difference to frequency so I also had a run with the stuff from Holland and Barrett which seemed to have a small beneficial effect so I may go back to that. I guess you have to give any of these 'remedies' a suitable period of time to achieve some benefit and not expect immediate results - one thing is for sure, Contiflo is in the bin having looked at the manufacturers list of side effects almost all of which were not mentioned by my GP.

I think the reduced caffeine plan works well but I will have to make more effort with the bacon butty and brown sauce remedy !

Hope things settle down for you

All the best

Beamer

[Loose rivets]

I feel I shouldn't try to bear influence but after all, you're all intelligent people and my experience is just another set of facts.

You CAN NOT have the prostate removed after Brachytherapy.

My Brachytherapy was a walk in the park. That is why I have rarely entered into the 'Buggah, I've got cancer' thread in JB. I had almost no side effects except rectal warning signals that can cause alarm.*

I don't think I bled much more than when I had the biopsy. In fact, the added fluid made me feel quite youthful. :O But of course, I didn't . . . you know.

After the main seeds insertion procedure, I had a snooze, was scanned with a Geiger counter and went home. That was it, apart from sending in my PSA's. I had to keep away from the g-kids - as in not cuddle them - and not be cremated for a year.

So where to go for reliable information when it's a make or break decision?

I found this page just now, but I haven't checked each site to see how up to date they are. Some would clearly be biased.

https://www.google.co.uk/search?source=hp&ei=3-nJWra4E8-SsAeNtpqwBw&q=success+rate+of+brachytherapy&oq=success+rate+of+bra&gs_l=psy-ab.1.1.0l6j0i22i30k1l4.1798.8644.0.11884.23.16.1.5.6.0.96.11 58.15.16.0....0...1c.1.64.psy-ab..1.21.1186.0..0i131k1.62.BIUlTmWC8JU





*bowl issues - even though often there's no need to rush. Once a week, or once a month. That's it, and it seems I'm one in 500 that gets this. I have to say, I thought the surgeon plucked that figure out of the air. I'm also suspicious that it may be nothing to do with the Brachytherapy as I'm troubled with distressing immune reaction issues which have been going on for years. 'Mr Muscle' nearly killed me when cleaning the bath. One of the main symptoms was severe tummy cramps and ensuing Picolax-type reaction. I've resisted all temptation to use the product as a laxative.

[BlankBox]

I would be going to the loo on multiple occasions through the night

...my neighbor seems to have found a solution to that. Low dose Gabapentin 300mg an hour before bed...no more urges. Gabo is such a benign drug that it might not hurt to give it a try...

[BoeingBoy]

Blimey. Have you Googled that stuff ?

Less serious side effects of Gabapentin may include:

dizziness, drowsiness, weakness, tired feeling;
nausea, diarrhea, constipation;
blurred vision;
headache;
breast swelling;
dry mouth; or.
loss of balance or coordination.

[cavortingcheetah]

The way forward is Prostate Artery Embolisation and that way at least, when the dissolved remainders of your mortal remains intermingle with that great heaving mass of plastic in the Pacific, your ecological soul will feel comfortable as part of the environmental proportionate scenery.

[BoeingBoy]

Just a little note to say that you don't have to consider your world at an end because of PCa. I got my Class 2 medical back this week after four weeks of hormone therapy and am good to chug around in my PA28 until I start Radio Therapy in a few months time. Another four to six weeks post radio and I can have my medical back permanently. If I had still been working I am told the same would apply but the process is handled by the CAA rather than by my AME.

Just needed to follow the protocol listed on the CAA site and provide a pre-treatment PSA and one at four weeks which showed that mine had halved in a month. The figures aren't significant so long as they show the treatment is working.

[cavortingcheetah]

Excellent news!

[tdracer]

BoeingBoy, I'm just finishing up my five weeks of beam radiation treatment (one treatment left on Monday). The treatment itself is pretty much a non-event - basically laying still on a table for ~10 minutes (there's not physical sensation associated with the treatment). But there are side effects. Based on my conversations with the doctor mine sound pretty typical - annoying but not horrible. Most noticeable (and annoying) is that I need to pee and poop a lot - roughly twice what was normal pre-treatment. Apparently the treatment irritates things and they don't work as well, plus the bladder becomes more sensitive (good news is that if a bathroom wasn't convenient, holding it was still possible - just unpleasant). If you have issues with constipation, you won't during the treatment... Also a definite lack of energy and a general achy feeling.
I get a month off, then they'll implant the radioactive seeds in early June.

[BoeingBoy]

Thanks td,

I wish you well in your Brachy course and hope the side effects clear up soon after completion. I used to suffer from Ulcerative Colitis in the seventies through to the nineties so I know what it's like to have a need of a bathroom in a hurry.

I was offered Brachy and RT but interestingly they were the other way around. HDSR followed by fifteen fractions of RT or twenty fractions of RT. I opted for the latter as I reckoned that by the time I'd driven the fifty mile round trip every day for three weeks I might have got used it and one more week would be less hassle than a surgical procedure.

Good luck anyway.

[BehindBlueEyes]

Is it usual to have a slight climb in PSA once HT is stopped? Dad finished his Zoladex injections in September 2017. PSA in February - 0.17 Latest result - 0.72 He tells me his doctor says that’s satisfactory and no further action required.

i assume this is as a result of the male hormones settling down to their natural level after the withdrawal of androgen deprivation?

[BoeingBoy]

Hi BBE,

If your Dad has been on HT the chances are he had Radio or Brachytherapy. It's quite usual for the PSA to rise post treatment, anything up to two years is not unknown, but it's more to do with the good cells in the Prostate regenerating having been zapped along with the cancerous ones during treatment. As long as it stabilises there's no cause for concern.

A lot of good information is here:

Prostate Cancer UK (https://prostatecanceruk.org/prostate-information?_ga=2.263485515.697563281.1537636785-1210444990.1537636785)

[BluSdUp]

Good Evening Boys!
About a month ago I read this entire thread , and was much inspired.
An odd thing I suppose.
But after an odd summer starting with seeing my dear cousin of on his final journey at age 58 after 8 years of struggle with Prostate cancer, I got tested.
All good and nothing to worry about said my Dr.
Breast and Ovarian cancer runs in my Momms family and Prostate in my Dads and Father in law , so I shall brief my children on the importance of early discovery.

I would like to thank You all for very intimate and informative information on Prostate cancer.
I wish You all best recovery and health, and hope to see You all for a long time in different discussions on pPrune in the future.

Yours Sincerely
Cpt B

[Buster15]

Following a trebling of my PSA level from 2.7 to 9 (I have just turned 68) I have had a bladder flow and scan. Subsequently I have had an MRI SCAN which apparently shows an anomaly so this week I am due to have a biopsy.

I have the usual waterworks issues but nothing too problematic.

Fingers crossed the biopsy will reveal no problems.

[BehindBlueEyes]

Any news on your results Buster?

[Buster15]

Any news on your results Buster?

Wow. I really didn't expect anyone to ask so I appreciate your response.

The answer is no not yet. I had the biopsy on 19/10 and was told I would have an appointment in 10 to 12 days. As it is now over 3 weeks I will speak with the GP tomorrow.

I was wondering whether anyone else could tell me how long they had to wait for their results, where they were given a Gleason score.
Many thanks.

[middlesbrough]

First specialist appointment 15 Feb 2016, MRI scan 18 Feb, Biopsy 12 March, Biopsy result and Gleason score 1 April, CT scan 6 April, Bone scan 26 April, finally, prostrate removal by robotic keyhole procedure. Gleason score increased ( very aggressive cancer in 3 places) after pathology examination of removed prostrate and seminal vesicles. Just as well I had it removed......

[Capn Bloggs]

Things are really slow over there. We get blood test results and Biopsy results in two days. Couldn't think of things much worse than hanging for weeks for biopsy results...

[Jackjones1]

I was diagnosed 8 years ago when i was 57.. PSA of 4 ... abnormally shaped prostate so I was told ... biopsy carried out & got results 2 weeks later ..Gleason score of 3:3 .... low dose brachytherapy carried out early 2011.....PSA went down to .5 ... steadily risen since then to 4.5 so basically treatment has failed so now told its either removal with rather telling side effects or wait till PSA reaches 10 then hormone injections but feel good & still alive so as I told family, friends & work colleagues get tested!!

[Buster15]

I was diagnosed 8 years ago when i was 57.. PSA of 4 ... abnormally shaped prostate so I was told ... biopsy carried out & got results 2 weeks later ..Gleason score of 3:3 .... low dose brachytherapy carried out early 2011.....PSA went down to .5 ... steadily risen since then to 4.5 so basically treatment has failed so now told its either removal with rather telling side effects or wait till PSA reaches 10 then hormone injections but feel good & still alive so as I told family, friends & work colleagues get tested!!

Thank you my friend. I have done the same to my friends.
​​​​​​
You have highlighted the problem with PSA test. The reading of 4 is within the upper level for your age. I too was told that my prostate was enlarged by my GP but the MRI SCAN apparently showed it to be normal. As the Urology Specialist explained only a very small proportion of it can be felt.

[Jackjones1]

Have to say Buster 15 that my appointment was already booked for 2 weeks after the biopsy & that was at Queen Mary’s at Roehampton & after that I was referred to The Royal Marsden at Chelsea who I can’t speak highly enough & I wish you the best that there is nothing untoward with you.
It is true what they say you have to be positive in these situations!

[BehindBlueEyes]

Wow. I really didn't expect anyone to ask so I appreciate your response.

The answer is no not yet. I had the biopsy on 19/10 and was told I would have an appointment in 10 to 12 days. As it is now over 3 weeks I will speak with the GP tomorrow.

I was wondering whether anyone else could tell me how long they had to wait for their results, where they were given a Gleason score.
Many thanks.

You’re welcome - having had dad go through the ‘process’ I know exactly how out of control you can feel. Waiting to hear was the worst part. PC was suspected with him and until firm diagnosis, all our minds were running overtime imagining the worst possible scenario. Strangely enough, once the result was confirmed, knowing exactly what we were dealing with was easier and more straightforward. His care has been superb although it didn’t start off on a great foot because he hadn’t had the result of his biopsy but a letter popped through the door calling him in for an urgent MRI.

I posted in September about my concern that his PSA post brachy/RDT was rising slowly but his urologist has confirmed that it will do and possibly level off at around 3.0 or 4.0.

[Buster15]

Have to say Buster 15 that my appointment was already booked for 2 weeks after the biopsy & that was at Queen Mary’s at Roehampton & after that I was referred to The Royal Marsden at Chelsea who I can’t speak highly enough & I wish you the best that there is nothing untoward with you.
It is true what they say you have to be positive in these situations!

Thank you so much my friend. I am by nature a very positive person and not overly worried. I look after myself and trust my body.

[Jackjones1]

I also had a friend who had rather a rapid rise in his PSA to 11 & they decided to do rightly or wrongly a biopsy & his came back clear just an enlarged prostate, but I would advise anyone over the age of 50 ( do believe a Swedish study said even earlier) to get tested as a work colleague of 52 had to have his prostate removed but thankfully caught early enough & is now fine.

[Buster15]

Thank you so much my friend. I am by nature a very positive person and not overly worried. I look after myself and trust my body.

I have just had a letter from the hospital telling me that the prostate biopsies showed nothing abnormal and hence no signs of cancer. That is a relief. I know that this is not a 100% certainty as it relates to the areas of the prostate the biopsies were taken from. But good news anyway.

[Jackjones1]

That’s good news Buster 15 & hopefully what will happen now is that they will keep a close watch on your PSA & possibly suggest some form of treatment to bring it down.
As you say they can never be 100% certain but with no doubt 10 biopsies it would have been picked up!

[Effluent Man]

My story really is a plea to get PSA tested. At Christmas 2014 my wife visited an ex neighbour to drop off a card. Her husband was a football season ticket holder and he had noticed that during half time he no longer had the energy to make his way down for a drink and back before the match restarted. A routine visit to his GP revealed prostate cancer that had spread and was now stage 4.

My dad had prostate issues so I visited my GP. His finger said I was ok but a PSA test was 21. Consultant gave me the finger and agreed with my GP. A biopsy (walk in the park in my case, felt like someone flicking you inside with a rubber band) revealed a Gleason score of 3+3 so cancerous but fairly low grade, non aggressive and present on just one sample of 14
Another consultant said he was puzzled by the disparity between a. 21 PSA and the relatively benign biopsy result.

i had hormone injections and 37 spins in the radio machine in January 2016. My PSA subsequently fell in six monthly checks to 6, 1.8 and 0.6. Last month my new ( Lovely Scottish lady) consultant told me that despite my hormone treatment finishing my PSA was now 0.2 and one of the edge of the best outcomes she had seen. The moral of this is pretty clear - GET CHECKED.!!

[cavortingcheetah]

In a case confirmed to me in the UK, five weeks for a sentinel node biopsy result following a positive diagnosis of aggressive malignant melanoma. That is obscene.

[Ascend Charlie]

Buster, any progress?

I had robotic surgery over 5 years ago, PSA instantly down to .008 and staying there. But luckily the cancer was completely contained in the capsule and hadn't escaped, so the pros of getting surgery sooner instead of later are quite prominent.

Nerve damage has slowly repaired itself, no need for Cialis or Viagra after the first year. And no wet spots any more! Well, not from me, anyway...

[bafanguy]

Just heard from another friend who has prostate cancer. This makes nine. If the quoted statistic that one in six men gets it is accurate, I have to wonder about the number I know since I don't know fifty four guys well enough to know their health status.

It keeps me getting PSAs and DREs. :eek:

[Buster15]

Buster, any progress?


I am sorry if you did not see my previous post but fortunately the biopsies showed nothing untoward so I am back to 6 monthly PSA tests.
Thank you for your enquiry and I am of course pleased that your treatment has gone so well.

[Imagegear]

Well, here I am, 18 days after my full radical prostatectomy, and well along the road.

My Urologist was doing routine annual checks and noticed a slight swelling to the right side of the prostate. He said he would monitor and then my GP noticed a slight bounce from 4.0 to 4.8. on the PSA, then it returned to normal (4.0).
Back to see the Urologist and an MRI happened with an indication of 2 areas of concern within the core of the prostate.(Left and right quadrants). 24 point biopsy yielded Gleason:3.4 and 4.0 respectively.

Followed up with Bone Scan and Tissue scan: both clear. The choice became - radio or radical. if radio, later surgery was not possible!

At 73 no question to answer - Radical.. The Urologist recommended going wide to ensure that anything in the Nerve bundles or glands was caught.

Had some complications with Catheter positioning and Pelvic pain, but eventually resolved.

Home for a week now, very little pain at this stage, control over urine and other functions returning to normal.

Results - No encroachment outside of the core, nothing in the semen vesicles, so effectively clear.
I trampled a bit of a rough road but normally it would have been a 6 day stay.

Of one thing I am certain: the PSA score could easily have been missed if I was not being checked for other stuff and even then the Generalist had to recognise it for what it was. The urologist already had an inkling (and told me) so when I was referred for PSA and the blood test was normal, he pursued the MRI for a first look. After that I entered the mainstream diagnosis and medical panel recommendation process.

The best of news overall, Physio starts next week.

Imagegear

[BehindBlueEyes]

Very good news indeed. Great that your urologist was vigilant and kept an eye on things. 4.0 is not usually a particularly concerning level at 73, so full marks to him for being so thorough.

[bafanguy]

Imagegear,

You've had quite an ordeal but I'm glad you've come out the other side OK.

I know a large number of men with prostate cancer (beyond the one in six statistic we see advertised) but they're all still above ground and doing well after a variety of treatment choices. You will be too.

They all caught it due to an elevated PSA or rate of PSA rise.

Choosing a treatment option seems to be a very difficult process.

Getting a PSA test is critical despite what we read occasionally read in the press saying they aren't needed.

Hang in there.

[tdracer]

Imagegear,

I know a large number of men with prostate cancer (beyond the one in six statistic we see advertised) but they're all still above ground and doing well after a variety of treatment choices. You will be too.

They all caught it due to an elevated PSA or rate of PSA rise.


I saw somewhere that the lifetime number was close to half of all men will get prostate cancer, although the number that require active treatment was quite a bit lower (not sure where I saw that). But few men actually die from it.
My own story has become a bit mixed. I got the seed implant a year ago June, and I'm still not fully over the side effects (thankfully I've not had any noticeable side effects from taking FloMax - which is good because I can readily tell if I forget to take it). The good news is that my PSA is low enough to be nearly unmeasureable and all the signs are that the cancer is gone.

I occasional hear of a Feminist that's claiming that if men got breast cancer, there would be a cure in short order. Prostate cancer is proof positive that those Feminists that claim that are clueless.

[ZFT]

I saw somewhere that the lifetime number was close to half of all men will get prostate cancer, although the number that require active treatment was quite a bit lower (not sure where I saw that). But few men actually die from it.
My own story has become a bit mixed. I got the seed implant a year ago June, and I'm still not fully over the side effects (thankfully I've not had any noticeable side effects from taking FloMax - which is good because I can readily tell if I forget to take it). The good news is that my PSA is low enough to be nearly unmeasureable and all the signs are that the cancer is gone.

I occasional hear of a Feminist that's claiming that if men got breast cancer, there would be a cure in short order. Prostate cancer is proof positive that those Feminists that claim that are clueless.

Sadly men can get Breast cancer. Met someone with just that during one of my cycles a few months ago.

[anxiao]

As this thread was so useful to me in the last four months, I feel honour bound to contribute something to it. I hope that it may be a help to others in our predicament, as many of the contributions in this thread have been to me.

At my previous flight medical the AME suggested a digital exam and a PSA test. As it was a few years since I had had one I agreed and he reported a small protrusion on one side. The lab test came back with a PSA of 10. I am a 69 year old presenting fit, and he suggested a visit to a urologist. I agreed and the next week I was again examined this time with an ultrasound and he said that the prostate was mildly larger so recommended a course of antibiotics. I was surprised by this as was my wife comes from a country and profession where the use of antibiotics has almost been banned except for very specific reasons, and never used as a give-it-a go type of intervention. Other aspects of this specialist from my personal point of view led me to find another.

Through medical friends I was directed to a consultant at Guys Hospital in the UK. I flew the required 12 hours to get there and had an interview with this consultant urologist. Within a week I had an MRI, and a transperineal biopsy. The MRI is fine if you can stand being in a tube and clash metal bands (I told the nurse I have heard worse in a Hamburg club) and although I was stressed about the biopsy it was a non event for me. You are under a general anaesthetic, you feel nothing and wake with no chemical hangover. Afterwards you cannot even see where the needles went in. I felt a bit of a fraud for worrying about it.

The result came back as a Gleason 4-3, mostly on one side of the prostate. The surgeon urologist, being a surgeon suggested a robot guided radical prostatectomy but sent me to an onchologist who specialised in radio therapy to the discuss the other options. Together they made me realise that I had to do something, that either procedure would be equivalent in success rate, and that in the end the decision was mine. Gulp.

Somewhere in the thread above, it may be from BoeingBoy, the poster said that the decision becomes an emotional one. To me that was excellent advice. It depends on your character type as to whether you want surgery or modern radio therapy. Three days before my decide day, I was for radio therapy. Then I saw that for me, surgery would be better, but it was a stressful time, and required a lot of shaving mirror discussions.

The next stage was an interesting one for me as I was pointed in the direction of a group of people that I did not know existed, specialist urology nurses, and one very rare character, a consultant urology nurse. I am still in awe of the consummate professionalism of these women, for they were all women. They have the empathy and approachability of a nurse, with the massive knowledge base of a specialist or consultant. They ran me though the pre and post op expectations in a way that a surgeon or onchologist would mostly be unable to provide. They prepared me psychologically for the operation and the post procedure fears of incontinence and impotence that were uppermost in my mind. For the first time in many weeks I started sleeping better. If your system does not have this level of nurses on your pay grade, pay yourself. They are the pastoral care you need at this time.

To help navigate the robotic procedure I had a PSMA PET scan a week before the operation, which uses nuclear medicine to illuminate the CT scan. This gives the surgeon another tool to assist his procedure planning and is not always performed, but was requested by my surgeon. I felt no side effects from the illuminating drug and to me it was like any other CT scan. I know that some people do get claustrophobia in these scans and I feel for them but for me they are no problem.

The consultant urologist who performed my prostatectomy was of a very high level. In the UK there is a web page of their association which even lists the number of procedures they have done, and mine came very near the top. Always a good sign that he is in "landing recency". I came round an hour after a 3 hour procedure feeling tired but under full pain control. (Anaesthetic drug protocols have come on in leaps and bounds in the last ten years, and the reversal drugs are excellent.) Two nights in hospital, although your insurer will try for one, but if there are any complications you are going to need the hospital system around you quickly, so fight for two nights. As my surgeon said, "You'll feel ten years older for a couple of weeks," which was a good description. I went to my AirBnb with a stack of Tena pads and adult diapers and felt a bit the worse for wear. I had five small incisions in my midrif, which itched a bit.

The pain scale is often given out of ten, so you give a subjective assessment of how much pain you feel to let the staff know if you need more pain killers. On nothing more that six Panadol a day I gave it a three for two days then dropped it to a two for a week. I had a catheter in which was removed in hospital after ten days which was a minor nuisance but almost undetectable during the day. Just remember to turn the bottom tap off after you have drained the urine bag. Like landing wheels up, there are those who have done it and those who are going to do it... I was tired and under minor discomfort but nothing as bad as I had expected. Every day I felt a small improvement.

One thing is not mentioned very much in the above thread is the possibility of constipation. You do not want to be straining with the surgery that has gone on near your pelvic floor. So take those laxatives you are given, and more if you need them. There is no reason you should have to suffer from this easily fixed malady.

Now a month on, I find I have no discomfort, I have a big pile of unused Tena pads and diapers and my bladder control is as good as ever. The old fella does not wake me at 0500 as before and will not without drugs or mechanical assistance. These latter were explained to me by the above nurses and sounded like something out of a Hamburg sex club in the 1970s - allegedly. When I have built up some stamina I have been advised to try Viagara as the surgeon managed nerve sparing on one side of the prostate and it may work. As Mrs anxiao has hidden the prescription (Pprune passim) it may be a while before I can report on this...

I have noted that I feel better than I am. I went for a six mile walk today and was told when I got back that I looked dreadful, white as a ghost and ten years older. I felt weak too. So do be careful as you go through convalescence, take it easy and accept that you have taken a big hit. It takes a while. Being in UK with lockdown has helped keep me close to home but having a compromised immune system in a time of a viral pandemic is not good timing. I have got used to the self isolation.

Next is PSA test two months after the op, and then three after that. This is a big worry right now for these will show if they got all the cancer cells out. Fingers and toes are crossed for the results.

Many thanks to all the above contributions, many of which helped me through this time. As Machiavelli said, "Nothing is as bad as it seems..."

[Capn Bloggs]

Thanks anxiao. What a fascinating and eloquent summation of your experience, and may you "become airborne ;) on your 0500 departure" again soon.

Re the dreaded decision between surgery or radiation, I will always remember Boeing Boy's quote: "The sword or the death ray".

It sounds like you were (and still are) in excellent hands.

Fingers crossed, for all of us, that the @#$%^& doesn't come back.

[BoeingBoy]

Somewhere in the thread above, it may be from BoeingBoy, the poster said that the decision becomes an emotional one.

Anxiao. I'm glad I was able to help and I'm glad my analogy between the Sword and Ray proved valuable to Capn Bloggs too. It's good to read of your journey and I hope your recovery continues. Interestingly I have a close friend who went through Pca at the same time as me and he chose the Sword. His experience has been very close to yours including the recovery and functional issues.

For me I'm two years down the road with PSA's around 0.36. No problems to report although probably as much age related I function best with recreational pharmaceutical assistance. Frequency is still more than I would like by day but I sleep well. Flying has continued by developing a deep meaningful relationship with a lot of 380ml Lucozade bottles (other beverages are available, but check the width of the bottle neck ;))

(Update July 20. Lowest ever PSA score at 0.31 so now discharged from Urology with just the Radio Oncologist to see next January. )

[RatherBeFlying]

BB, we glider pilots use external catheters, a bit of tubing and bags or bottles. Saves fumbling in the cockpit.

I like these: https://www.urodry.com/products/geewhiz.html

There's a wide variety available. Stay away from the ones with adhesive (think ripping off a bandage) and and the flimsy ones.

For more info, search "glider pilot relief".

[Jackjones1]

A quick précis of my dealings with prostate cancer....... diagnosed 10 years ago with a Gleason score of 2:2 & a max PSA of 6... 3 options available ..removal, radiotherapy or brachytherapy.... opted for low dose brachytherapy at Royal Marsden Chelsea...... PSA dropped to .5 .... but now gone up to 6 ... had PET/CT Scans a few years ago & told treatment has failed, when I had brachytherapy was informed removal after treatment was not really an option but time moves on & now can be achieved....... face to face chat coming up in September to discuss what happens next which could be just anti testosterone injections or removal which could well involve removal of bladder at same time which obviously I don’t particularly want or maybe cryotherapy & my question is has anyone had or know someone who has had this option plus or minus problems with it?

As an aside it was amazing the amount of people who never were tested for their PSA reading & all I will say is please get checked it may save your life!!

[Loose rivets]

It's astonishing that some doctors talk of the morbidity that the PSA check can cause and deem it a reason not to do the checks. I've always thought that was a bizarre bit of logic. Let's not put red warning lights in aircraft in case we upset the crew with false warnings.

I've not heard of low dose brachytherapy, though yours was a low Gleason. I'm sorry to hear of your bad news.

Mine was 4 - 3, the bad way round, and right on the borderline for the procedure. Given the choice again, I'd go with the same procedure. The only side-effect I had was 'Bowl-hurry'. 1 in 500 chance was stated, though I felt at the time it was a figure plucked out of the air. All it meant was the signal that I wanted to go did not give me much notice. I watched my wife and daughter ride the London Eye from the embankment, there was no way that I could be trapped in a place like that. Commuting to Texas meant a full Picolax procedure 36 hours before flying.

[Jackjones1]

When I was diagnosed aged 57 I encouraged work colleagues/ friends to have a PSA test ... some did some didn’t..... a couple who went to different doctors were told “ have you any symptoms “ .. no ... “ well don’t worry about having test done” ...... one work colleague/friend who eventually got tested had prostate removed at aged 52 & friend aged late 60’s had radiotherapy both now ok.

Low dose brachytherapy is the standard one with permanent seeds implanted 66 in my case but you can have a brachytherapy boost which involves radiotherapy & hormone treatment combined with the brachytherapy.

I don’t take it as bad news Loose rivets more as the case of another river to cross & I think it’s all about staying positive.

If anybody else reading this feels like they need to read up on forms of treatment etc etc the website to go to is www.prostatecancer.org ..... no offence to our colleagues across the pond but I was told don’t read about prostate cancer on American websites as you may think you won’t make it!