Prostate Cancer (Merged)

[Mike6567]

I am age 63 and flew for 30 years mostly longhall.
I have just been diagnosed with prostate cancer (PSA 8.1 and biopsy result 2 cores out of 8 Gleason score 3+3=6). MRI scan indicates cancer confined to the prostate. I had an uncle (my father's brother) who died from this cancer age 74.
I have decided to go for a Robot-assisted Laparoscopic Radical Prostatectomy. This is comparatively new in the UK but has been used for some time in the US.
I would welcome comments from anyone who has first hand information on this operation.

[Irish Steve]

Mike,

I can't comment on the robot assisted aspect, but I had a radical prostatectomy just over 3 years ago at age 52, (which is young for prostate cancer), with a Gleason also of 3+3, and it was confined to the prostate. I've not been flying professionally, but held a class 1, and was able to get that renewed last year when there was a possibility of flying.

I was in hospital for just over a week, and off work for close on 6 months, but that wasn't helped by a massive flood at our home just before I went into hospital, and at the time I was working on the ramp at Dublin, so I had to be 110% sure that I was completely fit before returning to what I knew would be a demanding job, the doctor was very cautious, and with all the things that had to be done to sort out the house after the flood, I wasn't going to argue.

Three years down the line, I'm not working on the ramp any more, though that was nothing to do with the prostate issues, but I am still working full time, with no problems.

I have a PSA check done every six months, and I'm due one now, the last one was still undetectable. From a day to day point of view, I have very few problems, the only one worth even mentioning is a very minor stress incontinence, certain positions will provoke a very minor urine leak, but it's very easily managed and contained by very lightweight pads.

Thr first few weeks at home were tedious, in that I was catheterised for 3 weeks, and the theory and practise of catheters are somewhat different. Mine was a nuisance, both from a comfort view and operationally. It also leaked, despite being checked several times. Mobility wise it wasn't too bad, I was up and about walking within 3 days in the hospital, not too far at first, but once the catheter was out, then further afield, to get the strength back. Driving was not allowed for a number of weeks after surgery.

No way can any encounter with the big C be dismissed lightly, but looking back over what's been happening, it could have been a lot worse. I can still do 99.9% of the things I used to, without problems, and so far, there's no indication of anything else to worry about.

OK, depending on how the surgery goes, there are some "personal" issues that you'll be facing, but an open forum is not the place for that level of discussion, if you want to PM me, I can give you some more specific pointers to books that are helpful, or other comments that might be appropriate.

Hope that helps a little, best of luck with the operation and recovery.

Cheers

[bafanguy]

Mike,

Can only wish you the best and tell you of my two friends from the airline biz who tackled this problem and are today fit as a fiddle after the surgery. It is one of the most cureable cancers as I'm sure you know ( 98% the last I heard...I'll take those odds any day ). The "cure" might be a bit of a tough go, but one does come out the other end cured.

Coming back here to bring us all up to date would be a service to us all if you feel up to it.

Best of luck.

[obgraham]

Mike:
No firsthand experience here, I do women, not men (!). However, my urological friends tell me that the robotic assisted prostatectomies go extremely well. Rising in popularity here in the US, probably because you can spend a pile of cash on the "DaVinci" machinery and we like expensive stuff like that. However the payoff comes in the ability to operate more precisely in tight quarters, and thus decrease the odd of damaging nerves while still removing the bad bits. That's the key to lessening the odds of those "personal problems" alluded to.
If I needed it, and it was available, that's the way I'd go.
___________
Graham MD

[RocketQueen]

Hi guys!

I think that the topic of prostate cancer is a big issue among 50+yr old men. My father recently went through a tissue-taking proceedure for biopsy... Right now he has an enlarged prostate although cancer is not ruled out.

This is the first time that my dad going to have a major surgery (if ever) and the family would like to be ready with the aftershocksthe operation might bring. After the proceedure he's now wearing a diaper to make sure he doesn't leak. :sad: Hope to hear more insights from you guys. Let's help each other out; we never know when we will have it too.

Long live!

RQ

[Milt]

Mike6567

Having almost identical levels to you of the prostate nasties about 12 years ago (no personal noticeable effects with a PSA of 9) and at age mid 60s, I was initially given 3 choices.
1. Radical prostatectomy
2. 6 weeks session of radiography
3. Watch for further developments.

None appealed so full blown research revealed CRYO (freezing) Surgery with one only surgeon experiened in Oz. Hollow probes inserted into the prostate under Ultra Sonic monitoring enabled the injection of liquid nitrogen which formed frozen tissue around the tips of the probes. This process can be very nerve sparing in the region and it rid me of the problem. This process has been considerably improved/refined and a better mix of cryo gases now used.

Brachy process seems to be the current popular way to go where by the prostate is mapped for the nasties and again hollow probes inserted under computer control to enable high radiation pellets to be inserted for very short periods and evidently resulting in very satisfactory zapping. Hear tell that this process can be all over and done in outpatients in a morning or afternoon session.

Meanwhile two of my compatriots have suffered terribly during their last few years on the planet and all because they were diagnosed too late.

Pre start check lists should include "Recent PSA test confirmed"

[wahey]

Prostate problems are more commen than people realise and they do not just affect 'old' men. If you are suffering from any type of urinary problems please read on.

There are three common disorders:

Prostatitis: - Inflammation or infection of the prostate. This can affect men at any age of their adult life. Although this is not a life-threatening condition it takes a significant toll on the quality of life of those afflicted. As well as urinary problems it is also characterised by symptoms of pain and discomfort around the anus, scrotum and the area in between (the perineum). Can also affect your sex life!! Experts do not know how to cure/control this.

Benign Prostatic Hyperplasia: BPH is a non-cancerous enlargement of the prostate. The gradual enlargement of the prostate gland in middle-aged men can cause problems by constricting the urethra, pinching off drainage from the bladder and hence interfering with urination. BPH is most common in men over 50 and about half of all men will have BPH by the age of 60.

Prostate Cancer: This is rare before middle age, with very few cases occurring in men under 50. Most prostate cancers are slow growing and many can be treated effectively or cured, especially if they are caught early. Prostate cancer is the second most common form of potentially lethal cancer to affect men


Only 1 in 7 men know what the prostate is, and fewer know of the three disorders. "Ignorance is not bliss"


Couple of great links:

http://uk.groups.yahoo.com/group/bps-assoc/ (http://uk.groups.yahoo.com/group/bps-assoc/) (support group for Prostatitis)

http://www.prostate-research.org.uk/ (http://www.prostate-research.org.uk/)

[Irish Steve]

Just to clarify a few things that have been mentioned here.

First is that in some cases, mine included, there can be no symptoms what so ever, but cancer can be present.

I was extremely fortunate that when I went to renew a class 1, the medical examiner in Denver decided that my prostate needed checking, if he'd not done the gloved finger check, I might well not be sitting here typing this. A few months later, my prostate was being removed with Gleason 3 + 3 cancer, which was close enough to being a more serious problem. As far as I know, it was caught in time, before anything nasty escaped.

Radio therapy, and associated treatments.

I looked very carefully at the options, as I had time, and talked to a leading radio therapy consultant here in Ireland. He would have done it if I'd insisted, but he made it very clear to me that radiotherapy was not the best choice for me, given my age and other circumstances. He put it like this. "We can't guarantee that we can place the radio therapy needles close to every area of cancer, or that they will be completely effective, and the same is true for external beam radiotherapy. Therefore, there is a possibility that we won't get it all. If you have radiotherapy, there is no surgical option at a later date, there will be too much scar tissue in the way for a surgeon to be able to get the accuracy that's essential. If you have surgery and at a later date we see a recurrence, we can then use radio therapy to attack the remnants".

That was a pretty convincing argument for me. OK, I was (relatively) young, and fit, so major abdominal surgery was not so much of an issue as it would be for an older man. the other factor was that radiotherapy is relatively new, so they don't have long term survival statistics yet, and my potential survival period after surgery is longer than they can predict yet. Another convincing argument!

Yes, there are "issues" either way. That's the hard call, and I can't make it for anyone else, but for me, surgery was the best option, and so far, nearly 3 years later, I'm not seeing any problems with the PSA, which is as good as it gets.

The important things.

If there is any history in the family of problems with the prostate, get it checked from age 45 onward. Unbeknown to me, my father had problems with his prostate in his 40's, and it was treated. I still don't know exactly what was wrong with it, but he's still alive at 80, albeit with some problems again showing up now. He doesn't talk about it even now, and knowing what I've had to go through, and regrettably, many men have the same attitude.

Any symptoms, get it checked, and don't delay. Caught early, it's VERY treatable, left too long, and it's extremely nasty!!!!

I'm not going to go into more personal details in an open forum message, but if anyone is reading this and is concerned about anything that they've seen here, PM me, and I am prepared to discuss in a lot more detail if it will help. Either way, DO NOT IGNORE prostate, the cost of doing so can be deadly.

Usual disclaimer, I'm not a medic, but having been there, and done the research big time before the surgery, I have more than a passing knowledge of what's involved, and yes, I'm prepared to talk about it if it means I save someone else from a very painful end. Nuff said

[scruggs]

Mike, I've got nothing to add on the medical sid of things. I just want to wish you the very best for which ever treatment you decide to go with.

Take care,
Steve.

[Kotare]

Excellent thread Mike and best of luck. I got picked up on a routine medical three years ago at 59 with a PSA of 8.1. Had a biopsy and, thank goodness, it came back clean for cancer, but did show I had an infection - that can have the effect of raising your PSA. Anyway, PSA is back down and holding steady around 4 and I am now on 6 monthly checks, finger and blood, and welcome it. I can only advise any male from 55 on to take this seriously and start getting regular checks if you aren't already.
Cheers
Rick

[ContractFlyGal]

My husband is having the robotic surgery on June 21. He is a commercial pilot based in the USA. His Class 1 is currently invalid, we are anticipating the best with this type of surgery. He did take the time to visit 5 different doctors before deciding on MD Anderson Hospital in Houston.

[Hawk]

Hello Mike
check here for previous discussions
http://www.pprune.org/forums/search.php?searchid=355013
cheers
H.

[ContractFlyGal]

Surgery is over for my husband. He is doing well. In the hospital for 2 nights. Still has the catheter but that comes out in a couple days. Still in Houston and will come home when he is able. All in all he says it went well. Day 1 and 2 were painful.

[Mike6567]

Thanks for all the replies and advice.
I have recently found a site giving a large amount of feedback on the robotic operation.

http://www.healingwell.com/community/default.aspx?f=35

This may be useful for others.
Mike

[cavortingcheetah]

:hmm:

This appeared on today's BBC web page. Perhaps it might be interesting to some?

http://news.bbc.co.uk/1/hi/health/5132546.stm

:)

[Lou Scannon]

To all the Brits: The ladies have long claimed the right to specific medical checks such as breast and cervix ( With total justification) but the poor guys dying from prostate cancer have taken a back seat when it comes to having regular screening.

Any male should be regularly screened (I hear from age 50). All it takes is a blood test that you can tag on to your cholesterol check. Just ask your surgery for a PSA check. (Prostatic Specific Antigen).

I once had a urologist tell me that he didn't believe in PSA checks. No problem: I told him not to bother in his case but in mine I was going to have one!

Amusingly I first read about it in the BALPA Log many years ago. I took a copy into my local surgery where the staff all took copies for their husbands/boyfriends.

[obgraham]

I once had a urologist tell me that he didn't believe in PSA checks. No problem: I told him not to bother in his case but in mine I was going to have one!
Unfortunately, all the data is not in on the value of the PSA, Lou, and your urologist friend's opinion is still a valid one. This is an area of medicine that is "in flux" shall we say. Much more needs to be learned about how to predict the course of the disease in a given patient.
I agree with you that it is a disease that has not, until recently, had it's proper share of research attention.
__________
Graham, MD

[kwachon]

Not sure about prostate cancer but I had a right lung upper lobectomy 18 months ago due to squamous cell carcenoma. I was given 3 months to live and only 35% chance of surviving sugery!. Lung came out easy with the tumor, had no narcotic meds after and got Class 1 medical back after 6 months. Now FAA want pathology reports etc 18 months later!!!!!, anyway surgeon says all is well. Moral is, if you want it bad enough, go for it. I am flying corporate in middle east and having a blast...Cancer can be the end, but also the beginning...never give up. Fight and Fight, then when you have no fight left.....fight again...you can win.:ok:

[kwachon]

My husband is having the robotic surgery on June 21. He is a commercial pilot based in the USA. His Class 1 is currently invalid, we are anticipating the best with this type of surgery. He did take the time to visit 5 different doctors before deciding on MD Anderson Hospital in Houston.

My lobectomy was at Scott and White in Temple, Texas. Surgeon was William Smythe of MD Anderson. Did a great job and I got my Class 1 back and am flying again.

[A2QFI]

As a man of 67 I keep an eye on these things and have read the above thread with great interest. I happened to pick up a booklet re Prostate Cancer in my local hospital and I was interested to see that one of the possible ways forward is referred to as "Watchful Waiting". Now it may be that the NHS (UK) is trying to save money by suggesting that, on balance, observing the progress of a cancer (if there is any progress) is cheaper for them and more beficial for the life quality of the patient than radical and invasive surgery? Please may I know what members who have posted earlier think of where Watchful Waiting might fit into a sensible and realistic cancer treatment regime? Thank you.

[Irish Steve]

Please may I know what members who have posted earlier think of where Watchful Waiting might fit into a sensible and realistic cancer treatment regime? Thank you.

As I understood it at the time, watchful waiting is used where the cancer has been detected, but (as far as they can tell) it's stage of progress does not represent a significant threat to the patient.

Unlike many cancers, prostate cancer is usually extremely slow growing, so while it may be present in the prostate, in it's very early stages, it does not represent a threat to other areas or organs, so keeping a close watch on the progression of development is deemed acceptable.

Unlike other cancers, which grow at very rapid rates, the majority of prostate cancer develops over a timescale that can well be 10 years or more. A high profile politician here in Ireland was diagnosed with prostate cancer in 1995 at age 69, and it is only this year that he succumbed to it. It was not deemed treatable 10 years ago, which suggests that he has been suffering from the early stages for considerably longer.

The other thought is that there is a lot of research at last being done on prostate, so if a patient is not in urgent need of treatment, there is a possibility that newer techniques for treatment may well be available before treatment is essential. In some cases, the development is slower than anticipated, so a rush to what may be major surgery can be avoided.

Equally, if the patient is not fit, or a smoker, or has other health issues, postponing surgery may be worthwhile if it is going to allow changes of lifestyle that will assist the recovery from surgery.

The emphasis is on watchful, it's not a case of the patient being long fingered, or to be specific, it should not be, the emphasis is most definitely on watching, and then making informed decisions at the point where it is necessary to intervene.

At the age of 67, and please don't misunderstand me here, if a routine scan detects cancer, it is very possible that you will be watched, and depending on other health issues, you may die with prostate cancer rather than as a result of prostate cancer.

My father in law is 83, and has had prostate cancer for a number of years, and as a result of other health issues, it's almost certain now that he will die before the prostate cancer becomes a serious threat.

Radical prostatectomy is by no means minor surgery, at the age of 51, and being relatively fit, I was able to cope with the surgery and recovery. There is no way that my father in law would be capable of surviving such surgery because of other health issues. He might be offered radio therapy if the need arose, but to be honest, from what I've seen reported, even that is not an easy option.

This isn't a medical opinion, just the thoughts of someone that's been there, and had to stare this one down and then take definitive decisions at relatively short notice. So far, it's been the right decision, 3 years down the line the PSA is still undetectable, which is as good as it gets.

Hope that helps a little

Regards

[Fortyodd2]

Hi all,

Didn’t particularly want to start a new thread on this but the previous one has been closed and it’s about time it was flagged up again. Talking to colleagues there is very little awareness of Prostate Cancer and, coupled with men’s general reluctance to discuss such subjects means that many are missed until it’s too late. Well, it’s out there and it got me. :uhoh:

My father, 67, was diagnosed with Prostate Cancer in April 03. Put the frighteners on me as he’d not had much in the way of symptoms but had been for a PSA test recommended by his GP which came back with a score of 128!! I happened to see a magazine article at the Barbers a month later which made me decide to go and have a similar test. GP happy to oblige and the blood was duly taken. Quite a shock when the result came back “out of range” – The limit for someone my age, 43 at the time was 2.5 – my result was 2.6. I was assured that there was nothing to worry about yet but I should keep an eye on it. My AME agreed and for the next 4 years we watched as the scores slowly went up. This year it got to 3.2 and I was referred to a consultant. My options were to do nothing yet, (just keep having the tests) or have a Biopsy and find out one way or the other. No contest as far as I was concerned. As my PSA was still relatively low, a 10 point biopsy was required and 4 weeks later I had a result – 2 out of the 10 cores were positive. PSA 3.2, Gleason 3+3. An MRI and Bone scan confirmed that it was Prostate Cancer but that it had not spread anywhere else.
Having been diagnosed at an early age, 47, and an early stage of the disease meant I had the full range of treatments available together with the option of doing nothing – yet.

After talking it over with wife and consultant the do nothing approach was ditched and, of the various treatments on offer, High Intensity Focussed Ultrasound or HIFU was selected. Basically, this uses the same technology as used in the biopsy to map the prostate but the power is turned up to very high levels and the affected area is "zapped" to destroy the tumour. There are fewer side effects with this technique and those which do occur are more easily treated.

On the appointed day I was wheeled into theatre and came to some 4 ½ hours later. An overnight stay was required due to the length of time I’d been under the anaesthetic. That was last Saturday.

I’m now off work for the next 6 weeks at least whilst I recover. I feel very bruised and sore but I can walk and move around. I have a catheter sticking out of my lower abdomen to ensure I can still empty my bladder which is a very sore process but improving.

The good news – My employers, my AME and the CAA have been very supportive and kept me flying until the day before my op. My father, still with us, is now 71, has a PSA score in the teens and is enjoying life to the fullest extent possible.

Hopefully, the recent TV campaign in the UK by the late Bob Monkhouse will have moved the subject a bit higher in everyone’s conscience and more cases will be diagnosed at an earlier stage before it gets chance to spread. I’m due back in hospital for tests on Monday and if all is well then catheter will come out.
Will keep you informed.

In the meantime, if you think it can’t get you, if you think it can get you or you simply don’t know, here’s a good place to start. http://www.prostate-cancer.org.uk

Happy to take pm's on this.

[gingernut]

Thanks for the post Fortyodd, I think that it is fantastic that you bring into the open, a subject clouded in ignorance and general embarrasment, and its great to hear that you are progressing well.

The current message is to get to the doc as soon as you notice any urinary symptoms, and get checked out.

I've got to throw in a word of warning re: the PSA test- it's just not that reliable at picking out what we hope it would- the science isn't that brilliant, so , as far as I'm aware, the use of the test alone as a "screening" tool is limited.

[Fortyodd2]

Thanks Gingernut,

I would agree that, from all the comments I've heard that the PSA test alone is not clever enough to be used as a screening tool but there are some new developments which could improve things. Having a test done, even if it proves negative, still puts a dot on a chart that can later be used to plot a trend and that's what helped my case. I didn't have any obvious symptoms and only went to the doc in the first place due to "Family History". Chances are that my dad developed it at about the same age as me but didn't get picked up till much later in life.

I still count myself as very lucky.

[Fortyodd2]

Went back to the hospital yesterday for “tests”. Basically to see that my bladder & waterworks system were capable of managing without the extra installed plumbing. Passed said tests which meant that I could have the catheter removed – as a result, I now have 2 belly buttons and my bladder is grateful for being returned to its original capacity. Still feeling a little bruised but improving – I won’t be riding my pushbike for some time.
The consultant is happy with progress so far. I have another progress check in 2 weeks time and then it’s a case of allowing natures repair process to get on with it. In the meantime I need to be getting plenty of gentle exercise and avoiding sitting for too long. Next appointment with the consultant will be at the end of November by which time I will have had a further blood test. If all is well at that point then he will write me up to the AME/CAA to get my medical back. If I had a “Normal” job, I could go back to work next week.

http://www.prostate-cancer.org.uk

[Fortyodd2]

A thank you to those who have been in touch for your words of support.

A couple of themes have emerged which I think are worth mentioning. From some others who have been diagnosed, they initially were reluctant to report the symptoms they were experiencing as they feared it would be diabetes which would see them grounded immediately/permanently - (like me, mostly single pilot, helicopter types). The other is a general ignorance of/lack of available information on the disease and its symptoms. The website link on my earlier posts is a good place to go for more information and there is always the option of talking to your GP/AME.
As I said in my first post, had my father not been diagnosed I would probably not have been picked up as I was not suffering from any of the common symptoms. In fact, the only thing I had become aware of in the last couple of years was that my bladder had become very intolerant of ground coffee. One cup would see me visiting the loo about 3 times in the following hour!

[A2QFI]

http://www.channel4.com/news/articles/society/health/new+test+for+prostate+cancer/826962
Will not be given on NHS unless there is a very strong family history of the disease. Costs between £200 and £400 depending on which report you read. Test involves giving a urine specemin after the gland has been 'massaged' via a DRA. Result in 7 to 10 days, the test reveals the presence of genetic 'markers' indicative of the cancer.

[Fortyodd2]

All well at the progress check today and I have been cleared to drive again as the "wound" where the catheter was removed has healed nicely. Now have to wait until the end of November for the next checks which will decide if I can get back to flying. Again, thanks to all Pruners who have been in touch for your support. :D

[Johnman]

Wishing you a quick recovery and I hope you'll get back to flying soon.

[PingDit]

Many thanks for being so open about what some perceive to be a taboo subject. I'm in the RAF and as aircrew, we take an annual medical. It was only by accident that a colleague (also over 50) informed me that once you'd reached 50, you could request the extra blood test screening for this. I've had it checked now for the last 2 years, nothing to worry about I've been told. However, is the blood test for this sufficiently accurate or should I be slightly more concerned?

Wishing you a full and speedy recovery! :)

[slip and turn]

Yes well done Fortyodd for bringing this not-often-enough-talked-about-man's-subject out again...

Being a bit more anatomically aware than some, and not too shy to talk to sundry GPs, I have had concerns about my prostate on and off throughout my forties having felt that it was sometimes enlarged (and being proved right), and having sometimes less than ideal bladder function (sometimes needing to go two or three times during the night, and noticing sometimes small leaks of a drop or two after returning to bed, but nevertheless still able to drink beer in respectable UK quantities and company without being the first to the toilet...:ok: )

I nevertheless have had a pervading image in my mind from a US made movie I saw two or three years ago (can't remember the name) in which the lead actor's father suffered from prostate cancer, could not afford the medical bills, and as it got worse, found himself sitting lady's style on the toilet, straining in pain to empty his bladder...I wouldn't wish that upon anyone...least of all me...

Despite two or three visits to specialists after renewed 'episodes' of things 'not seeming quite right' over the last ten years, including recently an endoscopy under local anaesthetic (not as uncomfortable as I imagined and quite interesting to watch on tv:{), plus PSA and flow tests, I have been given no adverse feedback. I haven't been told that there was nothing to worry about, just not told anything informative at all basically. I do rate the head of practice at my GP's surgery too ... but the low key approach seems to be the UK way unless you make a nuiscance of yourself. Not necessarily good in my opinion. Seems to fit with an old-fashioned 'work until you drop' type culture, but doesn't seem to sit well with 'planning a long leisurely retirement' kind of thing...

My view is that disorders of the Prostate gland are amazingly still very much a cloudy subject in the United Kingdom if not worldwide, and only remain so because UK GPs and specialists are not ready to get into the oncosts of pro-active preventative regimes at the moment. Probably eats far too far into their precious budgets.

Having seen this thread, whilst also recognising that simple PSA tests are notoriously rough and ready indicators, I think I'll call my GP in the morning and just check to see what the numbers actually are for my tests.

Best wishes to Fortydd with the recouperation, and thanks A2QFI for the link to the report about the new test.

[Hobo]

S&T , check your pm box.

[Fortyodd2]

Bumped to the top again.
In the meantime, I'm continuing to heal, getting very bored and strangely looking forward to the blood test in 3 weeks time.

[Loose rivets]

The big question.

Suppose you have an old bloke, say 68 years old. He's told that he has a nodule on the right side of his prostate and he asks the doc if it's likely to be anything else but cancer. 'No' is the answer.

Well, given that it is indeed the case of almost certain probability, then one of the options at this age is to play the waiting game. Monitor and wait.

Firstly, what is the risk factor of playing that game like at this particular age?

If deciding to monitor only, is there any point in going through the tedious ritual of a biopsy? I mean, what will it profit you to be sure of something you're not going to do anything about?

Just wondered.

[obgraham]

The biopsy result (tumor aggressiveness, etc) might influence whether or not to continue the "watchful waiting" plan.
Best discussed by urologic oncologists. More than one.
_______
Graham

[Hawk]

If deciding to monitor only, is there any point in going through the tedious ritual of a biopsy? I mean, what will it profit you to be sure of something you're not going to do anything about?

Are you saying you will not seek treatment on a bad biopsy result?

[Fortyodd2]

My 2 cents worth on Loose rivets question. An elderly relation of my wife has been diagnosed - current PSA of 7.8. He's 86 and his doctor has said that if he hasn't died of anything else before he's 120 then to come back and see him. The drop in quality of life and the upheaval caused by surgery at his age would not be worth it. So he's having injections once every 3 months to keep it quiet and he's enjoying the rest of his life.

As for me - blood test on Thursday - watch this space.

[gingernut]

Fortyodd, the management of your relatives case appears reasonable, (most men over 80 have prostate cancer) but caution, LR's situation is slightly different.

LR, it sounds like your current situation with your prostate, is causing you some confusion. Watchful waiting is a reasonable strategy in some cases, but it sounds like that you havn't had a firm diagnosis (via needle biopsy), yet?

As already expressed by obs g, you will need to take specialist advice on this, it's unlikely your GP will have access to the tests, and interpretation of the results, that they will have.

Keep us posted, ginge.

[Loose rivets]

That's right.

The specialist seemed fairly certain that the lump would be cancer and said there was no point in putting the (squeezed )drops into the jar...we'd past that stage because of what he'd felt.

He wants to do a biopsy, but given the possibility of me 'doing nothing' for a while, this seems that an unpleasant procedure could be delayed.

I asked him what the risks were of a biopsy freeing cells globally. He said that it was not an issue. I wish I could be sure of that.

I can't see the point of a biopsy unless there is a wide scale of findings from such a procedure. In other words, giving a guideline as to the urgency factor. Right now it seems that he is just going to confirm what he already knows.

What I haven't had is a Free PSA analysis. What I read is that this gives a very good indicator of the likelihood of malignancy.

He seemed quite certain that the biopsy was the only way to go now, but he is also the owner of the clinic, and in a cynical moment I wondered if he was drumming up business. Having said this, he does seem a nice guy that knows his stuff...but having said that, I see some figures that indicate that a fair proportion of lumps can be benign. That counters what he said.

So, does stabbing it release deadly cells globally?

And does the biopsy tell more than just yes or no?

As for playing the waiting game, well, my back pain was so bad yesterday that when he told me about the lump I didn't give the proverbial toss. But then, if I followed my own beliefs, the pain was probably psychosomatic.

I guess I could flick a coin.

[VH-MLE]

Hi Loose rivets,

I'm not a doctor but for me personally I would have a biopsy if it was recommended to me. Don't worry about whether the Dr also owns the clinic. In the overall scheme of things, that shouldn't be a deciding factor in my point of view.

Gingernut and obgraham always seem to give sound advice from my observations and they seem to be suggesting that consulting a specialist is the way to go at this point.

Good luck with it all.

VH-MLE

[Fortyodd2]

Gingernut and LR,

Perhaps I should have elaborated. My wife's relative did have his doctors opinions confirmed by having a biopsy as did my father. Don't wish to put you off but he, my father and myself all agreed that the biopsy was the worst part of the diagnosis/treatment package. It was uncomfortable rather than painfull but afterwards I felt awful for the next 24 hours. I certainly didn't feel that bad after the op.

LR - Have a check on the website in one of my earlier posts, get as much info as you can - knowledge dispels fear. You've already got over the biggest hurdle by talking about it and going to the doctor. :D Even at 68, (same age as my fathers diagnosis), it's still treatable/manageable. Don't leave it until the point that it decides to go elsewhere.

[Bad medicine]

I think we've got about as much as we're going to get out of this thread. It is not the place for specific advice. That can only come from your treating specialist. To make decisions on treatment, you really need to be in possession of all the information specific to you.

Cheers,

BM

[Fortyodd2]

The Good News.
After blood tests and a visit to the AME armed with a consultants report the man from the CAA Med Dept say yes!! Still have to copy them the results of future blood tests, (Initially 3 monthly then 6 monthly once the consultant is happy that I'm "Stable"). Hopefully getting back in the air this week.

The Bad News.
Just heard today that the NHS are going to cease funding for HIFU as it is too expensive and will only be done if "all other treatments have failed". The whole point of HIFU is that it works best on those caught early and can only be effective if it is the first treatment - the main advantage being that, if you have it and it doesn't work, it does not rule out any of the other treatments :ugh: :ugh: :ugh:

Looks like I've been even luckier than even I thought! Thanks to all Ppruners who been supportive and to the Mods for un-locking the thread to enable me to post this.

Happy Christmas and a safe 2008.

[John Hill]

Congratulations FortyOdd2! :D

I know from experience you have been through a rather stressful time and so have those around you. In my case (PSA 66 at age 58) we went for the photon torpedo and hormone therapy and three years later I have a normal life expectancy.

My message, get the checks done, insist on them and if you get the bad news have the recommended treatment. We have mad drivers in this country (New Zealand) , too much booze and too many poor roads yet more men die of Prostate Cancer here than get killed on the roads. Most cases you will never hear of.

Once again, three cheers and throw your hat in the air for FortyOdd2!:D

[Loose rivets]

Well, I 'came out' on SaS's thread, and am still sitting here wondering why I didn't do anything earlier. A life-long interest in things medical, but I went deep into denial on this one. The thing is that it's pretty standard psychology, but other factors rode right over my logic circuits.

Much of the time that I'm ppruning, I'm on pain killers and booze. Pprune is a kind of pub replacement. Back pain has altered my life totally and I was wondering if breaking the bank and going for surgery here might have worked...Three surgeons have refused to operate back home. If I dig deep enough, I guess I was thinking what's the point in finding other problems when I'm unable to fix one that has wrecked 8 years of my life.

It's kind of frustrating to be so fit and not be able to walk far or pick up the g-child. Bugger all cholesterol, 110 over 70 and a heart lung that a 30 year old would be pleased to have. All for nowt. All by thinking the parts were as strong as the whole.

Anyway, having got very angry with a 'practice' (read unprofessional robbing :mad: ) down near the boarder, I finally found a urologist in a major town that waived a huge amount of the cost of my biopsy. The news was not good, but supposedly confined. How could they know that?

The HIFU is not approved in the US, and my chance of getting on trials has come to nothing. Back home, as you say above, has seen the NHS pull out of funding. Okay, that's pretty standard, but the timing!! Having said that, my Gleason sums out to a borderline figure anyway, they may not have approved it on that basis. My guardian angel here, said today not to hang about, a couple of months perhaps, but no more. Pretty scarey stuff.

The sudden change in bowl function and now a little pain in the gut may be psychosomatic, but I doubt it. I have only told one pal back home about it, and he reminded me that his dad had prostrate removal -- followed by popping off with cancer of the gut a while later. Just what I wanted to know.

Years ago I put a penny in a slot machine and watched the old brass needle swing round to the message..."You will die when you are 72." I can clearly remember breathing a sigh of relief then, but if I don't make 72, I want my penny back with interest.

[John Hill]

The news was not good, but supposedly confined. How could they know that?

Thats was the news I got, my score was expressed 7.5 on a scale of 10 however my tumor was not confined being on the outside of the gland but gamma camera scans, cat scans and various xrays showed no signs of it elswhere.

I believe in some cases the tumor is actually right inside the gland and may take a long time if ever to spread from there.

Please feel free to PM me if you think my experience may be of use to you.

[Loose rivets]

Thanks for that, I may well do so.

Mmmm...let my guard down in that last post, but back on my usual nutty form today.

There is no doubt that I will have to go home and take the advise of specialists. To comply with NHS rules, (kindly phoned to me here by a financial officer) I have to ensconce myself there for a while, well, I'd have to do that anyway. Tough one that, 70f and blue skies here.

I need to know if there's any further problem, no point in only tackling half an issue. If all is confined, I might just break the bank and pay for HIFU If the stats are good, it certainly is the least...erm, disruptive.

£11,500 for the main course. Afters come in at £130 a visit. I no longer have BUPA, just too expensive, and in fact at my age I would have paid many times what this would cost over the years.

Just down to logistics and luck now.

[John Hill]

Thats what I did, found an expert I felt I could trust and took his advice. HIFU was not an option for me in New Zealand but I was fortunate enough to join a trial which is designed to clarify the benefits of radiation and various hormone treatment programmes. Being on the trial got me treated promptly in our public health system.

I have since met quite a number of men with prostate cancer, some are back to a normal life and some have ceased to draw their superannuation.

You mention half a problem and perhaps you are thinking of 'get it out, get it over with'. Please check on the likely side effects of the various treatments as they are not the same for different treatments.

Hmmm, I wonder if it would be appropriate to describe on here just what hormone therapy did to me?:hmm:

Yeah, luck does play a part but I tell myself that life is an adventure and like all good adventures there are some hard bits along the way.

[Fortyodd2]

OPC and Line Check completed - Back on line :)

[MightyGem]

Glad to hear it. AM by any chance??

[Loose rivets]

Well, I gave getting on a trial here my best shot, or I should say some very good friends did on my behalf. It seems that I'm too far gone to be of use on HIFU machine testing for the authorities, inasmuch as the gland is too large to allow the energy focus point to reach the middle. Furthermore, the Gleason is well over the top for FDA? tests. My fault, just didn't get it checked for a long time.

Again, I just can't think what was making me bury my head in the sand. I've pored over medical books ever since I could read, but realize now that I know very little about this problem. Very odd.

[Fortyodd2]

L-R Sadly, you are not alone. A recent publicity campaign on the TV by the late Bob Monkhouse is trying to raise awareness amongst men but the UK male general reluctance to discuss anything to do with "down there" is a huge hurdle to overcome.
Everybody ~ Go here for info
http://www.prostate-cancer.org.uk

[Milt]

Prostate Cancer continues to eliminate too many of my compatriots with some who were diagnosed too late by retarded/ill informed GPs. Now with my OBE (Over Bloody Eighty) and having come through the Prostate mill with some success I continue to be concerned by an elevated PSA which has plateaued at around 12. Are there others out there who have also plateaued at an elevated PSA after treatment?

My Prostate was eliminated by cryo-surgery at age 68 following 2 bad biopsies out of 6. Cryogenics enabled the freezing destruction of selected portions of the gland using liqiid nitrogen via inserted probes under ultrasonic visuals.

Now I am left wondering whether we aviators have been zapped by too many cosmic rays. It seems we have a higher rate of PC than others.

If you are content to go sooner to the big hangar in the sky after much suffering then don't bother to keep tabs on your PSA which remains as the best indicator that you may be a victim.

[Loose rivets]

Despite briefing the hospital 6 years ago to have my MRIs of my back ready with the surgeon in time for my visit, they weren't there. He sent me for standing X-rays on a hi power machine. The first lot didn't 'come out', so I had a second set of blasts. It was for the very lowest part of my back, and I wouldn't be surprised that these very hi-power machines are causal in some cancer.

Some 'experts' are now saying that we shouldn't be using x-ray at all unless it's vital. I had a bad feeling about that day when it happened.

Flying must pose a slight risk, but there is also the factor of five-point harnesses and long periods with one's pants pulling on one's nuts.

Daft job really.

[Loose rivets]

I read today about prostate-cancer causing back pain. I've had back pain for 8 years, but just lately I felt that it had changed; tending to be a tad more chronic. This combined with a bowl function change made me wonder if it had already metastasized.

Since prostrate cancer is supposed to be asymptomatic, does anyone know if the associated back pain can sometimes come before it 'escapes'.

I have been offered radical robotic here for a sum that fits in with my emergency planning, but it would not do a broad spectrum check over within those costs. I just feel that I have to have other diagnostics. Would these be done in the UK as a mater of routine, or only after evidence that it has escaped out of the gland?

[Fortyodd2]

L-R,

My diagnosis after the biopsy was followed in quick time by an MRI scan and a bone scan to make sure that it had not gone elsewhere before treatment started. The consultant wanted to be sure there was nothing headed towards the nearby Lymph nodes. There is a follow up MRI planned later in the year. Not sure about the back pain although it was one of the reasons that my Father went to the doctor in the first place.

[Loose rivets]

Just what I wanted to know, thanks.

This back pain thing is described in a paper about natural chemicals/foods aiding the battle. Again, it seems that Asian men are nowhere near as likely to be affected by prostate cancer. To my surprise, curcumin is again (my thread on Alzheimer's and Parkinson's ) considered to be a major factor.


I have been offered treatment on a HIFU machine outside the US., but they want to shrink my 49cc down to below 40 with hormones -- to reduce the distance for the focal point of the energy to reach the middle.

It seems that the later generation of $700,000 machines can 'see' with added clarity in the work-space, but it still does not give me any confidence in the containment of the disease. My feelings at this time are to go with the full procedure at home.

[kwachon]

Interesting topic this. Having survived lung cancer now for 3 years I am a little concerned about the Prostrate. I have had many MRI's and PET scans, the latest PET one month ago and MRI 2 months ago. Both were full body and showed no problems in the lower regions with the exception of "slight calcification of the colon", my question is, does prostrate cancer show up on a PET scan?. anyone know?

[Loose rivets]

The answer is that I don't know, but while I can understand your sensitivity to the problem, you would have to look at the statistics to really see if your previous condition pre-disposed you to prostate cancer. Certainly some reports show that either parent having prostate or breast cancer, can increase the chances by (Memory) 2.3.

While a low PSA reading is no guarantee of a healthy prostate, a very low figure V age, would be rather reassuring.

There are CAT scanners and CAT scanners. I was looking at one a few months ago that was stunning. In fact it was so good, that I wondered if it wasn't artificially enhanced just to impress the clients. I'll try to find out if this can see nodules in the prostate.

[kwachon]

Thanks for the reply, I did see a specialist about 6 months ago due to symptom of prostrate cancer and despite the finger and PSA very low, all was deemed o.k., this calcification business troubles me though, hard to find any info.

[Loose rivets]

Well, I've just finish speaking to the owner of a CAT scanner. He says that it's not fullproof and that the ultra-sound can sometimes show the lining to the prostate better. However, the CAT will of course look at the bone structure to some extent and importantly, the lymph nodes in the pelvic area and carry on up as far away as the lungs.

[John Hill]

Kwachon, l dont know either if such a scan will show prostate cancer but I do know it is usually detected initially by other means, various symptoms are warning signals then a DRE (rubber glove procedure) and a PSA blood test are the next step. There are various conditions other than cancer that could cause a raised PSA and the rubber glove is more or less effective depending upon where any tumour might actually be and the experience of the finger in the glove.

If there is a cancer concern raised by the DRE or PSA test the next step is a biopsy, needle samples. This is not to be undertaken lightly as there is a risk of causing adominal infection which can be severe, there might be other drawbacks.

I am not an expert in this area but was diagnosed and treated a few years ago and I am not active in a support group for sufferers of prostate cancer so anything I say is really my own experience not the advice of an expert.

[fernytickles]

"Years ago I put a penny in a slot machine and watched the old brass needle swing round to the message..."You will die when you are 72." I can clearly remember breathing a sigh of relief then, but if I don't make 72, I want my penny back with interest. "

Best you make it through this, then L-R Don't be wasting that penny! I'm sure everyone who "knows" you through pprune will be keeping their fingers crossed.

All the best to everyone else on here having to deal with cancer - hopefully 2008 will bring better news for y'all.

[Loose rivets]

Thanks for that...One is mindful of the film Big, and the mysterious nature of the Gypsy in the fortune telling machine.


While I would not for one moment advise anyone, even as a layman, to resort to alternative medicine, this was forwarded to me by 'er indoors. Its a rather well presented paper with a vast list of the reference studies at the end. As mentioned, curcumin pops up in it.

It takes a while to read, but some of the work on vitamin D is now making world news.

http://www.naturalhealthvillage.com/MXC52-REP.pdf

[Fortyodd2]

Just had the latest blood test result. The count is down slightly - and therefore headed in the right direction - but not as much as the consultant would want to see at this stage. So, it's back to see the man again next week to decide on a plan of action. Will keep you posted.

[aussiepax]

Hi all, as an amateur planespotter I take close interest in all the Ad.com and pprune posts.

In my other job as a urologist, i'd be happy to comment and offer advice for those posting in this forum, and give my (specialist) 2 cents worth.

Congratulations on all those talking about CaP and raising the profile as it is an important health issue for us guys. Caution must however be taken as each man;s situation is treated differently : a 45 year old with high grade cancer is in a vastly different boat to an 85 with incidental cancer : the only similarity is the title.

[kwachon]

Welcome aboard Aussiepax, maybe you can explain to me what "some calcification of the colon" means, I have looked everywhere and cannot find a simple answer.

[aussiepax]

well, it is a radiologic ( xray) report finding rather than a disorder or disease entity. It would usually mean nothing. It may be seen because of small fecoliths (calcified stool) in corners of the bowel , particularly with diverticulosis.

Many areas of the body, including the prostate, can get calcification,
but again the clinical significance is rarely great.

[kwachon]

Thanks, It turned up on my last CT Scan report but I never got an explanation. :ok:

[Loose rivets]

I have just had a wake up call. The 8.5 PSA, and the advise that I could consider things for a couple of months, has now gone out the window. I got a 11.48 yesterday. Also my FREE PSA is in the 5s :(

My Gleason was 7 with 3 X 3+4s and one 4+3. That was in December.

My question is, could the biopsy's 12 points of intrusion, have affected a score 2 months down the line? After all, there is plenty of blood after the procedure, would this make the prostate send out its signaling molecules?

Am I clutching at straws?

I'll put some Texas prices in just for general interest.

I've not been ignoring the problem. I'm being referred to a specialist at home, but went to a place that does radiation treatment at a bargain price. They said that the actual procedure was done by a "Technician". Is this what would happen at home? I can't imagine the consultant messing with the 15minuets zap a day, so I suppose it doesn't seem unreasonable.

Why I'm concerned is because another former Brit had radiation here and ended up being hospitalized 3 times cos of adhesions. I don't want me pipes cooked. $10,500 and 45 trips to the hospital. This compares with $28,000 in a bigger town.

The other option is to have it out with robotic surgery. $23,000. Since the surgeon is supposed to be a Maestro, and the machine is the DaVinci, it's very tempting to blow the bank and have this soon, but that does not include any scans. I have many symptoms that make me want someone to have a good look round, but they could well be stress induced.

If only I could talk on the phone to an English surgeon as readily as here. One aspect of the $'s power I suppose, but every penny I spend comes out of my meager pension and can never be replaced. Decisions, decisions...

[aussiepax]

Hi loose rivets, yes the latest PSA could be up a bit post biopsy, but the relevant issues here are that with Gleason 7 disease, that is a clinically significant cancer. With a PSA even of 8.5, I would advise some form of active treatment.

Your options are these
1) radical prostatectomy surgery : either open surgery (4 inch cut above the pubic bone) or keyhole / laparoscopic (with or without robot assistance). The current internatiional data do not find any difference between the types of surgery other than less blood loss with lap vs open. Any claimed benefits or differences with regard to potency or incontinence rates are just that - claims. Up to 50 % of rad prostates are done with the robot in the USA, perhaps < 5 % here in Australia. THis is mainly due to logisitcs / money / marketing forces at work. If you have stage 1 ( non palpable) disease, you could expect 78 - 92 % cure with surgery.

2) Radiation therapy : this can either be external beam ( daily zap for 5 - 6 weeks) or internal (brachytherapy) or a combination.
The external beam alone is probably not the gold standard any more. High dose rate (HDR) brachytherapy with some external beam boost would be more costly but can deliver more dosage to the prostate while minimising the side effects to bladder and bowel. Overall radiotherapy has less immediate damage to erectile function, but in the long term not much different to surgery.


Bargain basement prices for treatment are equivalent to low cost charter airlines - get the drift ?
The very top end prices could also be bumped up by their need to pay their advertising budgets etc, so again caution and a common sense approach is needed there.


In summary - have some treatment within the next 3 - 6 months. You would be well served by either HDR brachytherapy or surgery. Discuss the side effect profiles with your doctors and once you digest that information, you will pretty much know which suits your purposes better.

Hope this been some help, regards.

[obgraham]

Good summary, aussiepax.
Rivets, the man has given you a good outline. Not my field, but somewhat knowledgeable, enough to know there is no 100% definitive therapy in most cases. Both lines of treatment appear to be effective in the majority of cases. You can always find some outlier who would have you believe all his docs were quacks, but by and large the results are good.
Get to it, my man!

[Loose rivets]

I really appreciate your input chaps, thanks. Will be taking one's head out of the sand any time now.

[Irish Steve]

I read this thread with interest, in that I've been on both sides of the fence, having had an enlarged prostate picked up in 2002 by an ME in Denver when I was renewing a medical.

On return to Ireland, it was properly and fully investgated, and the end result, not too much time down the line, was a radical prostatectomy, and I'm going to comment on the reason for that now.

I was regarded as very young for Prostate Cancer (51), Gleeson was 3 + 3 on the biopsy, and post operatively, 3+4. I did the research at the time, (2002) and the best piece of advice I got was from a consultant radiologist, who put it very succinctly to me in words something like this.

We can indeed do seeding brachytherapy on this, but there are 2 reasons why I would not recommend it to you. The first is that you are relatively young, and reasonably fit, and the second is that while this treatment has been in use for some time, we don't know the long term effectiveness of it, and if you go this route, you rule out surgical treatment if for some reason the radiotherapy doesn't get it all, as there will be too much scar tissue in the way for a surgeon to be able to operate to the very close tolerances required for success.

That made my mind up for me, and I had radical prostatectomy. I've commented on that in older threads, most of which appear to have been locked now, but I'd still say the same as I did then, with now 5 years down the line to look back at.

So a quick summary

At the time, I was working on the ramp as a baggage handler, and was able to go back to that job, which has to be one of the most physical of jobs in aviation, and the return to it was successful. I'm not doing that line of work now, but that's not for this thread.

I was able to get my FAA class 1 medical back, so Prostate Cancer does not mean the end of a flying career, if that's what you're doing.

At the time of the initial diagnosis, I had no symptoms what so ever, nothing of any kind to indicate that there was any sort of problem with the prostate, if I hadn't had the Class 1, I would not have known about the problem that was there.

If you have any family history of prostate issues, don't leave it to 50 to get it checked, 45 is a safer age to start PSA checks.

PSA checks are not conclusive, but give a guide if there is a problem. A guide is better and safer than not knowing.

Do NOT ignore ANY symptoms of problems. If caught early enough, treatment now is highly successful. 5 Years down the line, my PSA is still undetectable, which is as good as it gets. I won't know for a long time if anything got out before the surgery, but the chances are very good that it didn't, and in that case, the prognosis is that apart from watching the PSA every 12 months, there's nothing else to be done, or to worry about.

My lifestyle has not been fundamentally changed. Read the older locked threads, and you'll see the comment I made then. There were changes, but the changes are far more acceptable than the alternatives. With a new grand daughter who arrived some months ago, that's even clearer now than it was in 2002.

Hope these few comments help, if anyone wants to PM me, I am prepared to be more specific in that area, but I'm not here as much as I used to be, so it might be a while before I respond.

Steve

[Loose rivets]

Interesting post.

I am seeing a specialist in the UK in about a week. It's the only way that I can have a broad spectrum of monitoring without crippling costs. The surgery here was really not too expensive for a normal working person, but for me it would have meant a serious dent in my so-called pension.

I think that if I was young and had just landed here, I would put my money into property rather than medical insurance. Only folk with a good job and premium insurance can relax if the worst happens. Even the co-pay on run-of-the-mill policies can mean the loss of one's home. get sick and it's likely that the insurers won't cover you again.

[John Hill]

Good news LR.:ok:

[Fortyodd2]

That's good news LR. Hope all goes well for you with the specialist. I'm just back from the consultant who is happy with the progress thus far. Next blood test in 3 months time.

[StickRudder]

Hi All, just a humble PPL since 1968 and ex-FI, but now grounded past 7 months owing first to 'acute retention' (5 litres!) emergency admission with associated kidney / cardiac trauma, ballistic bp and various following procedures, drug courses and ops .... and latterly because psa was increased to 20.8 , and subsequent biopsies confirmed a malignant prostate tumour. Have been permanently catheterised throughout - mainly the nasty exit version (:mad:), and bladder is completely wrecked. Now have the 'kinder' abdominal version fitted, but still not a happy bunny....

The AME has just rejected my Class 1/2 renewal advances for the 4th time this year, indicated that the Class 1 has gone for good, and that even doubtful Class 2 potential requires much more investigation and treament etc etc etc....it doesn't look good. I understand that even an NPPL self-certification/ GP sign off is invalidated if an AME has issued a rejection, until condition is sorted and stable ?

If you know anything at all about PCa, will be aware that all of the treatment 'solutions' are risky, life-changing and often ineffectual - and that's even if the wee cancer seeds haven't yet gone walkabout elsewhere in the system, determination of which isn't an exact science.
The initial gamma ray bone scan was negative, but other scans (mri, ct) are usually needed also. The next psa test is tomorrow (8/8) and a great deal may depend on which way it has moved. From a quality-of-life perspective my preference right now would be 'active surveillance' , but have already had many indications to counter that option. The most obvious objection is that this stuff is quite insidious, keeps festering and can break out quite quickly and almost un-noticed....and when picked up, may then be too late to treat.

I did once see an earlier thread on this subject on Pprune, following the progress in some detail of a young pilot so diagnosed (anybody know where that went ?). Whilst I'm not exactly young and have no intention of following suit, would welcome observations of all kinds to help with upcoming decisions...and of course, any personal experiences re. getting back into the air !

Cheers for now...... David

[uklocations]

?? http://www.pprune.org/forums/medical-health/227381-prostate-cancer.html although I'm sure there was something more recent.

Sorry to hear of your problems, it can be a truly sh1ty disease.

I couldn't make out from your post, is it localised to the prostate and what's the issue around surveillance?

[StickRudder]

Hi UKLocations and others ... and sorry for the delayed action response.

My staging is presently T1c / Gleason 6, bone scan clear and awaiting MRI. Latest PSA test had gone down to 12.8 (after June high at 20.8) , but need another test before long to see if the l/t trend is still up...and I'm told I need to get it consistently down below 10, to be considered for 'Active Surveillance' .... although they'd much rather I went straight for radical surgery or radiotherapy - like at least 99% of the other punters do ! Trouble is, any of the treatments have very significant unpleasant side effects, very often prove unsuccessful..... and are likely to change you for good.

Although my Class 1 renewal is being denied and even Class 2 attempts seem like climbing a huge mountain, have just managed to stagger airborne again in a small way, courtesy of the CAA's most enlightened recent move in extending the 'Self Declaration / GP Countersignature' route to holders of JAR licences who only wish to exercise NPPL privileges (essentially Daytime/VFR only). This removed a significant anomaly, but only gets a small way back to where I'd prefer to be (Class 1 reinstatement).

Have read the detailed JAR advice on cancers in general, and it seems very hot on ensuring significant treatment and stability before clearance can be considered. However...there is another anomaly here ; There are very many people out there - and that probably includes quite afew Prune readers (maybe even YOU !) who actually have the Prostate Cancer (PCa) inside them, but just don't know it yet ! Unless you develop symptoms or are tested for some other purpose (or just simply 'screened'), you might never know at all....but logically, if PCa in general was considered such a risky thing, why aren't Prostate Biopsies mandatory for all pilots ??!!

Any other stories most welcome.....sorry to rant. Off to fly my little aeroplane over a few fields, and will try my very best not to terminate any defenceless cows or burn any crops after spiralling out of control as the cancer suddenly bites....

[homonculus]

Loose rivets

I have only just seen this thread - sorry

I am happy to put you in touch with a surgeon who does robotic radical prostatectomies in the UK - please email me as I dont want him inundated. He has been doing them for some time with the Da Vinci system,

My understanding from him is that the robotics does NOT effect the success of the operation in terms of getting you into remission. It does allow more intricate dissection of the tumour from the surrounding nerves and thus reduces the incidence of nerve damage which includes impotence.

Best of luck

[John Hill]

Hi StickRudder
Please accept my sympathy and best wishes and allow me to outline my experience with prostate cancer for whatever use, comfort and encouragement it may be to you.

I was diagnosed at age 58 three years ago. My PSA was 66 and Gleason (if I understand correctly) 7.5. The cancer was outside my prostate but had not spread, bone scan, MRI etc etc were all clear. It was made clear that delayed treatment was not an option for me.


I did what I usually do when faced with a challenge outside my sphere of expertise and that was to find an expert I could trust and to put my trust in him. His advice was to take the path of hormone therapy and radiation treatment. Three years later I have a normal life expectancy and no side effects that are more than a mere annoyance.

During treatment which started with 6 months of hormone therapy, basically supression of testosterone, my PSA fell to 9 which is not great but better than 66. I had 33(?) sessions on the linear accelerator and another year of hormone therapy. My PSA was 1.4 earlier this year and is now 1.2.


I did have some side effects, the radiation treatment caused such tiredness that I avoided driving after treatment though I did drive to work each morning. I had hot flashes which are not funny but no big deal as many women put up with these as a matter of course. I lost 30% of my strength according to weights at the gym. I laid down both male and female pattern fat deposits! My balding was reversed and for a while I had a full head of hair again! I did not suffer total impotence and anyway, as they say, (sort of) you can always learn a new tune to play on an old fiddle.


I avoided going into 'invalid mode' and carried on my life as normal as possible during treatment. I did up my gym programme a little and did not spend even one day at home 'sick'.

My advice is the same for everyone I meet who is in the early stages of the prostate cancer experience and that is to take the advice of an expert. I dont believe all prostate cancers are the same and neither do I believe the right choice for someone is the best for another.


I have met a few men in the last couple of years for whom diagnosis came too late or have serious and permanent side effects but they are among the minority.


Regarding diagnosis, monitoring PSA is still, as far as I know, the best way of early detection of prostate cancer. PSA is a natural substance and plays a part in the reproductive process so every man should have some and the normal level in one is not the normal in all others. It does however raise alarm flags when the level changes. Biopsies are a much better indicator but are not without risk as they require needles being stuck deep into the abdomen and the most practical path raises serious risk of infections.


Once again, please accept my best wishes for you and the people around you during the time ahead.


Please feel free to PM me if you wish.
John

[Loose rivets]

One was offered the Da Vinci machine in Tx. before Christmas, but there were so many other symptoms that I imagined that there might a secondary in my spine. Years of back pain were blurring with the symptoms and a displaced rib (caused by the Rivetess' rather vigarous back adjustments:E ) was causing me to yelp when rising from bed. She managed to put it back from whence it came, and the anti-inflamatories I take now have subdued the back pain....so, it was just the cancer to considder. Not quite in that order, but you know what I mean.

I'm now carrying 80-100 radio iodine seeds, and these have been irradiating me for some weeks.

I now can not have surgury. I guess because all the once clear boundaries of different organs are glued together in a, I hope, dying mass.

When I was diagnosed, all I wanted to do was to come home. Just be here, dunno why. It wasn't the money, cos I've spent far more than the $23,000 than the total hospital package would have cost. Now I don't know. There has been one cock-up after another. Mostly paperwork. A total disregard for my personal burdens like work, despite making an impassioned plea for the first check-up to possibley be done whereever my work took me. I stressed that I was not on holiday or retired, but had a real need to work. No. GET HERE.

I got there and filled in a five point form on how well I pee. I still don't know what I'm going to do about this, I walked out miffed but determined to bite my tong. Many days later I'm still as angry as hell. We'll see.

Other things I asked to be check as a logical procedure are now, after 7 months, being attended to with a vengeance. I was filled with Barium and air and had about 20 pics taken of my large intestine. Plus being on the fourth blood test in as many weeks.

Why wouldn't they listen? Is it some secret procedure that anything a patient thinks might be a good idea is taken off the list of possible treatment?

If I've got cancer of the gut, all the prostate work will be wasted. Total confused madness.

Haven't they heard of CRM? We're now supposed to listen to passengers reports of sparks coming out of engines etc., are doctors above listening?

It wasn't just that. My surgeon had shown (3 times) what my (highly quallified ) kids think is a very poor show in patient psychology. Strange little hissy fits about unrelated issues, with threats of cannceling my treatment at the last moment. All his retiue round the bed looking embarresed. They'd seen it all before it seems, and I was told not to worry. My life is in this man's hands.:hmm:

[John Hill]

LR, hang in there mate! Getting grumpy is part of the process and I believe I still have a couple of grumpy cards up my sleeve.:ok:

Lets hope it has not spread, have you got any indication that it has apart from the back pains which you have an explanation for anyway?

Take heart in that your Prima Donna doc only keeps his job because of his skills, not his personality!:)

[obgraham]

Some years ago, Rivets, I was on a hospital credential committee considering a new neurosurgeon. He brought a track record of obnoxious behavior from several prior places. Yelling, throwing stuff, cussing at nurses, that sort of thing. I was opposed to him. It always gets worse with time, and we had enought of those bozos.

A surgeon colleague looked at me, and simply said "but who do you want looking after your 17 year-old who's been in a car wreck - the demanding one, or the touchy-feely one?"

He was right. The guy was a bozo. A very skilled bozo.

Continued best wishes, LR. You've had good treatment.

[Loose rivets]

Thanks for that. One will maintain a dignified silence for the moment.:oh:

His main hissy came from me saying that I react to pethidine. Such a sensible piece of information to give I would have thought. But there, 'The whole world's daft...' etc.

[Der absolute Hammer]

I bring this subject up again.
Last week I talked with a specialist urologist (prostates) in Johannesburg. He stops doing radical extraction operations now and uses brachytherapy. He told me the following story...
A man was referred to him absolutely convinced that he had prostate cancer. He has no symptoms at all. His test PSA comes in at 1.0. Yes - one.
So the surgeon tells him not to worry. The patient makes insistence that a biopsy be made and it is. Yes certainly the analysis is that he does have prostate cancer.
So what made him go to the specialist surgeon in the first place?
The answer is that a friend of his wife has a dream in which an angel appeared and told her to go to her friend and speak with her because her husband has prostate cancer.
Now, you may laugh or not, but this is a true story and the surgeon I saw is not a man to make a joke of this thing. He told me that it makes the hairs on the back of his neck stand up. It makes mine to curl a little too.

[Lou Scannon]

Mmmmm. For every case where the angels/psychics/tea leaves correctly reveals some nugget of information, there are thousands that get it wrong.

The difference is that the only ones that get noticed is when, by some statistical abberation they guess correctly, as in this case.

I do trust that the urologist relied on some other more medically scientific reason to carry out the procedure other than the belief of the patient's wife's friend (Who he had never even met!). Had he proceeded with any invasive investigation on such ridiculous evidence alone he would not have had the patients best interests at heart.

I wouldn't trust this man with my bits if the story is correctly reported!

[Loose rivets]

Well, several months after being implanted with Radio Iodine 125 seeds, I'm down to a PSA 4.5 I gather that this is about on schedule. My Free PSA is still low (not good-should be >20) but I can't get any data on how this particular test is skewed by the procedure.

According to a graph on the net, the radiation should be down to .165 of the original power. During these months I have been almost without any post operative symptoms whatsoever. By this, I mean pain, sexual function and the like. There was however, some soreness of the urethra for a while, and I seem to be reliant on 'Flow' pills as much as I was before. But, all in all, the Brachytherapy seems to be the least disruptive of all treatments. So much so, that One wonders if anything is happening sometimes. However...My fellow traveler through this did have to be rushed back to be catheterized. Must give him a ring. A pal in Texas had to be rushed in three times for a catheter after external beam. So, not much to choose from that point of view.

The pre-procedure, called 'Volume Studies', was/were done under general anesthetic and is supposed to be very much more accurate than the early days. Hope so. They then order the seeds for that patient only. If the op is missed, they throw the seeds away! You go in the day before, or even on the day, and the seeds are put in via holes made between testicles and rectum. Not many holes for the 80 - 100 seeds, but the targeting is supposed to be very accurate.

(It's funny, but weeks later, I had a look at my glowing seeds on an active low level x-ray machine, and there didn't seem to be that many. They were certainly radiating in the x-band as well as gamma, thought the x is much less.)

Anyway, the whole thing took three days for me, well, one and two half-days really. So you can see just how great the advantages are - if it works! Worst figures I've seen are the surgeons...at 67% success bottom line. Better on some other statistical assessments. There is supposed to be no difference between this and the external beam success wise - according to numerous sources.

Now I've got two issues. 1/ Will it save my bacon? and 2/ Will the peeing get better?


Again, the issue of folk not getting checked is showing up. Two friends are steadfastly not getting their PSA checked. They can not explain why. It seems to be a bloke thing, but I'm hacking away at them, they'll do it soon if I have my way.

[IFLy4Free]

Best place for robotic surgery is MD Anderson in the USA. I have a friend who had this done and was in hospital for 1 day, and got his FAA Medical back in 1 month!

[Loose rivets]

Had I known that back pain and other symptoms were not related to the cancer, I would have gone for the quick removal in Texas, but they based their reason for not doing further tests on my initial Gleason figures. I had a 4+3 and several 3+3s, so you can see that I was getting to the risky stage.

The trouble was that I have a very active imagination, and I could visualize offshoot cell growth making its way to the edge virtually at cellular size. Just a thin line, that's all it would take. I wanted more than an assessment of chance.

As it happens, the time at home cost me a deal that was to be my income for some years...so not always the best option to shy away from spending a bit. :ugh:

[aussiepax]

Hello again Loose Rivets.

Your irritative urinary symtpoms are very common post brachy for the first 3 - 4 months. likewise the need for Flomaxtra - type pills. The need for such pills should reduce soon.

If your disease was Gleason 6 - 7 , you have moderate risk disease that hopefully should be dealt with by the seeds . In the longer term, as a urologist, I would like to see your PSA to down to below 1, after brachytherapy. (You can get a PSA "bounce" up to 2 - 3, about a year to a year and half post treatment).

You should make a point of finding out whether your post treatment dosimetry was adequate (i.e did you get the best possible dosage from the seeds) . This would have been checked by means of a CT or MRI scan done after your seed implant : this is important in knowing that the whole gland has adequate treatment.
Continued good luck to you LR.

Aussie

PS Our surgical results are almost as good as brachy, and much better than the 67 % mentioned. Horses for courses though !

[maxter]

Just been told that I have P.C. (gleeson 3+4 whatever that really means).:mad:

My question is, how do you identify that the person giving me advise is as good as possible. There is no 'score system' that 1 can judge a specialists/surgeons skill advise against. Initial advise has been surgery.

Early days for me so all just a little scary and at 57 have only finished 50% of what I want before I leave this mortal perch. I fully intend to achieve all my goals, so just want to base my next steps on the best advise possible.

[Loose rivets]

Thanks for that, Aussieand all.

I'm trying to work my way through all sorts of problems at this juncture of life. The cancer has seemed like minor, if rather tedious, interruption into what has become a chronic nightmare. Having said this, I accept life's challenges for what they are, and am just hanging on...flying through a storm, as I put it the other day. The endless banter on JB in my case, is an indicator of the extent One can go to to avoid reality.


maxter. I read obgraham's post several times. Getting skilled advise that you can trust is always problematical. Humans are strange creatures, and sometimes interaction that is good in one instance, is bizarrely inadequate in another. But all in all, I think you can trust this finding as a starting point at least.

I assume that you've had a biopsy. The samples should be very carefully laid out for the lab work, so that the physical position of each sample is reasonably well known. I wasn't ready to accept this as the only indicator with my Gleason 7 - containing among others, one 4+3 sample...but the surgeon in Texas was. Robotic removal, without any further tests. As I've said, that wasn't enough for me.

For reasons that I don't understand, I think a 3+4 is better than a 4+3. The overall Gleason is the guideline, but the 'ferocity' of localized bits is indicated by the layout of those numbers. I'm sure you'll be fine providing you follow expert advise.

Right now, as I've said, it is the almost total lack of side affects that leave me wondering if enough has been done. aussie's post has, or will, galvanize me into planning the next stage, but if the treatment so far turns out to be adequate, it will have been a very minor burden to bear.

All in all, having been diagnosed at this stage, you're way ahead of the game statistically. Good luck.

[aussiepax]

Hi Maxter.

Well a Gleason 3 + 4 is better than a 4+ 3, as the first number refers to the most prominent grade (tumour activity) under the microscope. The other factors relevant are your pre biopsy PSA result and the size and texture of your prostate. Having said all that, for you at only 57 years old, the correct treatment is a radical prostatectomy operation. That is providing your staging scans show that you are free from distant disease (metastasis ) This operation has the best chance of curing the disease, from 70 - 95 % depending on the above data points, and the best method of normaising your life expectancy.

The potential downsides are erectile dysfunction and urinary incontinence, both manageable, and the former a more likely problem than the latter.

The method of surgery, whether open, laparoscopic or robotic is not so important, as all have the same incontincence and ED rates, despite what various of my colleagues and other non-urologists may pitch to you . The important thing is that you feel comfortable with your surgeon. Are you in Oz, Maxter ? feel free to private mail me if you want further local advice or to check further on what you have been told. I'm [email protected] .

Regards , (urologist) Graham