My Story - A Cautionary Tale

[Brian]

I am 81 year old who has gone from being, supposedly, free of Pc in May 2016 to having Pc Gleason 3+4=7 in June and then Gleason 4+5=9 with metastases in August 2017.

In 2014 I had a DRE and Ultrasound of the bladder which were clear so went on medication (Flowmaxtra) to improve my peeing. I had PSAs regularly which were about 1.0 but but in May 2016 my peeing became more difficult and I was recommended to have a TURP.

In June I had the operation and a biopsy was carried out on the removed material. This came back G 3+4=7 but the PSA was only 1.03. A CT scan and Bone Scan showed that I had no metastases.

I was put on watchful waiting and had PSAs after 3 and 9 months which were both below 1.0. By now I had a lot of blood in my urine which was put down to my cycling and blood thinners. I complained to my urologist who said that a cystoscopy would put an end to my concerns.

The cystoscopy was interesting as the urethra was blocked by a bleeding mass of tissue. I was in exploratory surgery as soon as my blood thinners allowed.

On August 2 2017 biopsies were taken from the removed tissue to ease the blockage. The results were devastating. They were G 4+5=9 and a Bone Scan showed that I had metastases in my acetabulum, pelvic girdle and right ankle. The biopsy also showed a rare cancer was present in the sample.

From the European Society of Radiologists:

"

• 4.- PLEOMORPHIC GIANT-CELL ADENOCARCINOMA:

• This is an exceptionally rare variant of adenocarcinoma with giant pleomorphic

nuclei.

• Few cases have been reported. In the largest series, patients ranged in age

from 59 to 76 years.

• Gleason score 9 is usually seen in many cases of adenocarcinoma.

• The disease course is very aggressive

"

I sought a second opinion from a medical oncologist who agreed with my urologist that the only treatment was ADT and palliative radiation, as required, to ease pain from the metastases. He also advised that he would not recommend chemo due to age and comorbidities.

So now I am on Zoladex and suffering from extreme fatigue. My bike has not been ridden since last October but at least I didn't need am RP.

My latest PSA is 0.5 and I have attached my last urologist's report.

 

For an account of low PSA at different points in your journey, see Jim's post below.

Report Copy.PDF

[alanbarlee]

Hi Brian,

You certainly have an unusual variant!

If you're a fit cyclist, I'd be a bit careful about one medical oncologist consigning you to 'too old for chemotherapy'. With GS 9, regardless of your actual age, for a fit guy like youseem to be I would have expected more consideration of either chemo (docetaxel- 6 x 3 weekly infusions), or abiraterone, in conjunction with your early ADT (Zoladex / Lucrin + Cosudex?). There are good trials supporting each of these treatments for men in your situation, as well as a lot of opinion that aggressive multi-modal therapy is called for with high risk PCa. The side effects and duration of the additional agent differ (as does the cost), but these are matters you could chat over with your medonc.

Up to you and your docs, of course (I'm not a doctor), but you may want to give the options some early thought.

Best wishes,

Alan B   

 

[Brian]

I believe that when my cancer appears castration resistant I will be placed on Zytega. As I have type 2 diabetes it will soon turn type 1 and insulin dependent due to the requirement to take prednisone.

Brian

[Admin]

9 hours ago, Brian said:

I forgot the Caution. Don't Rely On Your PSA!

Brian

The PSA story varies with where you are in your disease.

• At diagnosis, your doctor would not rely purely on PSA only in deciding to start treatment - hence biopsies and scans.
• At first recurrence of your disease, PSA is a reasonably good guide to the status of your cancer.
• At more advanced levels of disease your doctor will be relying on using other measures with PSA to check what is happening.

That said, your doctor will be worried if your PSA is very low when prostate cancer is first discovered.

This is because low PSA at diagnosis (but not later) may indicate:

• small cell carcinoma;
• neuroendocrine carcinoma; or
• pleomorphic giant cell carcinoma;

and your doctor will depend on your pathologist to check the samples taken on biopsy to look for any of these less common prostate cancers.

Jim

 

[whatmeworry1941]

Have you discussed with your Doctors, Radium-223 or Luteium-177?

[Patrick Turner]

Hi all,

Brian, I do hope you get back to cycling. I'm 70. 

ADT seems to affect blokes in different ways and not all want to talk about it. I got diagnosed with a Gleason 9+9 which doc found to be inoperable when he opened me up in April 2010. I had Psa just over 6 at biopsy in 2009. I should have had a biopsy when Psa was 3.0 in about 2005, when I bet they would have found a Gleason 5 at least. I bet the Pca spread widely when Psa was 8 before op and beginning of ADT. EBRT at end 2010 did not do much, and I've had to deal with slow moving Pca that is in my bones and nodes and maybe elsewhere right now. Abiraterone has worked for 7 months, but is waning and I may try enzalutamide  next, then docetaxel.

But meanwhile I've been cycling 250km a week, 98km just last Sunday, 22km average and I felt fine, and then spent 5 hours at PC composing website pages. I can't really advise how to avoid your fatigue, but since mid 2006, I have cycled about 120,000 km, and I won't be happy if Pca shoves me off the bike, but then when my knees did that 2 years for awhile I just accepted it and dealt with it, had a double TKR and found that if I was cheerful and not whingy with the medicos, they liked to help, and its all a man can do. I've been on ADT now since 2010, and I have been riding faster than the other 70yo in a group who have a full bottle of testosterone.

I don't always like riding in groups because of silly hierarchy,  silly protocol, and because most blokes are non communicative, selfish, have no intention to be friendly, they just ride. Sometimes some quite fit women turned up to group, between 22 and 50, and they are nice company at café stop, but they can't keep up with this old castrated bloke, and there's a terrible generation gap. At least the group shows to myself where I am with fitness. But most rides are alone, and I much enjoy it. I have no idea for how much longer. 

If you cannot cycle, is there something else you can do?

I can't say much, but its hard to stay well forever.

Patrick Turner. 

 

[alanbarlee]

G'day again Brian,

Adding to my earlier post and your response concerning steroid-induced diabetes, you could discuss with your medonc whether switching Zytiga-related prednisone to either an even lower dose (e.g. 5 mg / day vs. 10 mg / day), or to an alternative low-dose steroid (e.g. 0.5 mg/day of dexamethasone - which I'm on with my Zytiga).

Note that low-dose steroid isn't as likely to give you the diabetes side effect as the higher doses prescribed for other medical issues. However, it's important to get regularly monitored for low serum potassium and high blood pressure (among other tests);  - these are potential side effects of Zytiga that the steroid is there to prevent.

It's all a bit of a juggle, but your doc is obviously the best person to discuss these possibilities with.

Cheers,

Alan

 

  

[Brian]

This is a response to Jim's post which I agree with.  I should have included the Caution in my original Cautionary Tale Post which shows that my diagnoses (I had to check if this is the correct plural of diagnosis) and treatment were all in accordance with standard procedure.

 

I can see, that read alone,  my Caution could be seen as advising fellow members of this group to disregard their PSA results. I am not qualified to advise on medical matters and only report on my experience with advanced Pc.

 

I have moved the Caution the the original post and tried to delete it.  Jim can you help here?

 

Brian

[Brian]

These are  replies to several posts which I thank everybody for.

 

 

Unfortunately I have not been a fit cyclist for about 5 years.  In 2011 I had stroke caused by Atrial Fibrillation.  The magnificent Paramedics  diagnosed the AF and radioed ahead to Nambour Hospital who had a stroke team ready on arrival in ER when I arrived.  A quick CT scan revealed a clot and no bleeding so I received a life saving clot busting drug.  I was home in two days.   I had 3 months therapy to recover from most from the effects of the stroke but I was never a strong cyclist again.  I had paroxysmal AF for several years and coped with with it using anticoagulants, Pradaxa,  and calcium channel blockers.  Five years ago I progressed to Permanent AF and now take Flecainide to control my heart rhythm which also induces fatigue. Incidentally my   Pc CT scan clearly shows where the the clot was.

 

The MO who gave me my second opinion walked me through all the aspects of my cancer and it's treatment.  He mentioned the aggressive additional cancer but I am also deaf and thought that he said Large not Giant cell cancer.  The only treatment was ADT, until this failed to work, followed Zytega.  Due to my comorbidities, AF and diabetes he felt  I would not tolerate chemo but I'll cross that bridge when I come to it.

I had metastases in my left acetabulum, pelvis and right ankle which would need to checked regularly as a PSA test would be unreliable. At present I have some pain which is controlled by paracetamol and will have more scans later this year.

 

My biopsies were carried out by the Managing Director of a specialist Urology Pathology Lab.  Check her out. She is a world renowned expert on Prostate Cancer

 

My GP thinks that 10mg of prednisone  taken with Zytega will make my diabetes insulin dependent but it will be a necessary evil.

 

My main activity is walking twice a day with Louis my dog and companion. I am alsoa delivery driver for Meals on Wheels looking after those sick and elderly folk

 

Brian

 

 

[Patrick Turner]

5 minutes ago, Brian said:

I have not been a fit cyclist for about 5 years.

Well that is not necessarily unfortunate because the alternative is to be simply robustly healthy. My mother lived to 98, and before 80, she used to swim a bit in a beach pool that was 25 minutes away. I went with her sometimes, and I ran the beach on sand while she did her laps, but she did them in slow motion, and I figured she wasn't at all into fitness, but liked just being at a beach, maybe talking to old guys at the pool, a natural thing for her to do, long after her husband died at 60. Life went on for her quite OK after she became a widow.

I am technically a fit cyclist, I just did 81km this morning. But I didn't take cycling seriously until about 29, when I bought a bicycle and rode a little bit. The building work kept me healthy, and I understood the meaning of the word NO when tempted by platefuls of terrible food or invited to drink until drunk. Very many of my peers while young could only socialise if pissed and with a cigarette and the habits of most ppl grated on me.

At 37 I joined a cycling club and did about 200 races in 6 years as a veteran. But walking or cycling down the straight road of not-too-much and working physically was no prevention measure against genetic knee knee problems or getting cancer, something that I expected to happen, so it wasn't any surprise when it did, mainly because I was aware of just how many careers and marriages founder when Aunty Destiny steps in and plonks a disagreeable sandwich on table of life, and you are forced to eat it.

 

Knees stopped me cycling after 6 years of it in 1993, then I had 12 years of a bit of building work followed by career in electronics for 18 years; this was sit-down work. But I still had enough kick to mow lawns, cut hedges, and do all maintenance on house.

I had a knee athroscopy in 2005, and that made pain a lot less, no need for Celebrex of Vioox, and I restarted cycling in 2006, at 59, and I was 20Kgs heavier than when I raced on bikes at 40. The weight all fell off in 6 months, and nearly all my speed I had at 40 came back and it was like being reborn, then whammo, Pca diagnosis with aggressive cells, young man's type of Pca Gleason 9, and after ADT started my speed nosed dived about 3 kph. Well, so what. I kept cycling 12,000km a year. I felt if I could cycle, I should, regardless of the cancer. and here I am many years later, and the agressive young man's cancer ain't pulled me low yet, and truth is likely I have hundreds of mets, goodness knows where; if PsMa scan showed maybe 15 spots 10 months ago, it means they were the spots big enough for the scanning process to detect. Detection of mets is only possible if there is enough Psa generation at a cancer site to attract enough gallium68 to gather to get an image to show up. I suspect all my mets are now slightly bigger than they were last year, but none are big enough to cause some organ like kidney, liver, pancreas, heart, lung to give pain or stop some vital function. My Pca probably began in about 2005 so I have had it now for 13 years at least. From Feb 2017 to May 2017, I quit the bike after double TKR, but life didn't end and I was never depressed, and docs knew I had Pca but let me have the new knees. It may have been different if I'd been 10 years older, by which time I surely may have had a few co-morbidities, if I had not got one large morbidity problem, Pca. I doubt I ever will see 80, the statistics show I have dismally small chance of seeing 80. So what. Just because life expectancy is about 84, it does not mean you'll get there, my father and a sister both left life at 60, and they had no control over that at all. 

Some years ago, the Dalai Lama was asked a common question by a radio shock-jocky in Perth one night, 3 minutes before the end of the show, "what is the meaning of life ?" Old Dalai quickly said " Ah, to be, ha ha Useful, and ah, Happy..haha..." and then the shock jocky had 2:57 to fill in, and of course he could not, and made a fool of himself, and he wasn't very useful, or happy.

Well, being useful and happy may have meaning, but usually happiness is only possible if you are useful. That's because society has some very dour ideas if not daft ideas about all useless ppl. For awhile I thought our dear Dalai man was right, until I got to 65, when I declared to all who read my website front page that I was now retired, and I would not be doing any more complex repairs to ppl's old electronic junk any more. A few didn't like that, so I asked them why they would not pay me for a day's work as much as they got paid as a clerk in Pubic Circus Office, just down the road. That usually shut them up. Most customers has zero idea about social wage justice. 

The old age pension of about $400 a week was twice what my net earnings had been for years, and once retired, I felt ecstatically happy although deliberately choosing to become Dead Useless.

I concluded the wise Dalai was not quite correct, because many ppl could be very happy being useless. After all, just when was the Dalai Lama, local priest, the Pope, or anyone else like that ever really useful? Are they happy while not actually being useful? They do not provide  goods or services others, although they give us reason to question. So is not their usefulness veiled?

During my time of employment between 19 and 65, what seemed to make me happy was the satisfaction of making OTHER PPL happy, even when I found I was always a doubtful about being happy myself. Then I thought about meaning for awhile, and my conclusion has been there is no meaning; the meaning of life is that it has none, we just find ourselves here, for a short time, never long enough as we'd like. The further we look into space, or backwards in time, or into sub-atomic going's on, the smaller we seem to be, and the answer of WHY remains stubbornly unanswered. This question is like a vacuum which has sucked in many crazy ppl to construct Gods to fill the vacuum, with umpteen rules, threats of damnation, promises of rewards after death. Well, I don't want to upset those who have such beliefs, but I will say that human goodness and evil definitely exists, and driving about for Meals On Wheels is a very good thing and I do hope Louis and yourself find the purity of wonderment that is to be found where you look. Last time I "owned" an animal, it was a cat who switched owners because my place offered peace and quiet, and no other animals. She was 6 when she moved in, and died after 12 years. I was forced to the vet to have him lay her low in my arms, and I cracked right up, and blubbered to the fellow " You know John, she was a far better companion than any of the women I knew..."  I buried her in my front garden. She was basically good animal, something we all need to try harder to be. She had black coat, with white blaze at front, so it was obvious to me that if she'd had a previous life, and that if there is re-incarnation, then she would have been a nun, but a naughty one, who drew the visiting young priests a little too close during warm evenings, when walking in the nunnery gardens awhile, under the gazebo, among flowers, who, by flowering, are having sex with each other. Life tempts, does it not?  

Patrick Turner.

 

[Brian]

It is about time that I updated my status. This taken from a post on  another forum back in May 2018.

 

"I have just had my fourth Zoladex implant and this is a summary my progress since I posted my profile.

After three months my PSA had dropped to 0.5 from its previous 1.0. I was having occasional blood in my urine but was told this should settle down.

At six months my PSA was 0.4. I had begun to experience pain in my left hip and my right ankle was very sensitive to warm (in the shower) water. I was still having blood in my urine. I was told that things were "still holding on".

At seven months I have a stumble and jarred my left hip which caused me extreme pain. I was taken to the ER, given morphine and x-rayed . There was no break but a bone scan was advised.

The bone scan showed that the metastases had grown. My GP referred me to a Radiation Oncologist. I was given five treatments of IMBR and I am now free of pain in my hip and can shower without wincing. It is a pity that they can't fix fatigue as easily.

Last week my PSA was reviewed. It was back at 1.0 and I was told that Zoledex had failed. I would now have Casodex added to Zoladex and my PSA checked in two months. I asked about Zytega ot Xtandi but was told that they required special approval on the Australian Pharmaceutical Benefits Scheme as they were Chemotherapy. I didn't think they were. I will wait to see how things progressed and see my my Medical Oncologist who had advised me previously.

I now will have a  two month wait to see how I get on. At least Louis still gets his walks down by the creak .

 

These are PBS requirements to receive Zytiga for $39.00 instead of $3,900.00

 

Castration resistant metastatic carcinoma of the prostate

 

Clinical criteria:

 

The treatment must be used in combination with a corticosteroid,

 

AND

 

The treatment must not be used in combination with chemotherapy,

 

AND

 

Patient must have failed treatment with docetaxel due to resistance or intolerance; OR

 

Patient must be unsuitable for docetaxel treatment on the basis of predicted intolerance to docetaxel,

 

AND

 

Patient must have a WHO performance status of 2 or less,

 

AND

 

Patient must not receive PBS-subsidised abiraterone if progressive disease develops while on abiraterone,

 

AND

 

Patient must not have received prior treatment with enzalutamide; OR

 

Patient must have developed intolerance to enzalutamide of a severity necessitating permanent treatment withdrawal."

 

Well it is now November 2018 and things have progressed.

 

In July my baby daughter, 56 this year, accompanied to see my urologist to review my latest PSA test. It was 0.98; my lowest ever was 0.3 and highest 1.03.  My urologist saw this as a positive sign and I laughed out loud.   My reading of published papers showed that the PSA test  is  very accurate but the readings can vary due to the patient's condition.  My previous reading of 1.00 and the the new reading varied by only 2.0% which was insignificant which, in my opinion, showed that the Casodex had not worked.  I was persuaded to give it three months.

 

I also  complained about soreness in my right groin.  It felt like the hernia I had fixed a few years back.  I was sent for a CT scan with tracer of the lower abdomen which started a chain of events which highlights the differences in the medical profession. 

After the scan I was called back as the "Doctor" wanted to have an ultrasound of the groin carried out.  I, of course, went back to the radiologist and the ultrasound showed an enlarged lymph node which had shown up in CT scan. Incidentally the CT scan also showed that my hip mets extended right across my pelvis.  I as advised to have a needle guided biopsy in a couple of days.  This conflicted with my next appointment with my urologist so I phoned up to move the appointment.  To my amazement I was told that the urologist had not authorized the ultrasound and did not support the new  biopsy and I was to attend my next appointment.  I was very upset and went to see my GP and friend of over 20 years to sort out what to do.  He advised me to visit the urologist as the biopsy could be done later.  Later I found out that he phoned both the  urologist and radiologist to sort things out.  The "Doctor" was a radiologist who failed to notify the urologist of the ultrasound but used the urologist's original authorization to conduct the test.  My urologist took offense and started a flurry of communications.

 

I attended the follow up meeting with my urologist who didn't think that the biopsy was necessary as the lymph node was almost certainty cancerous.  This with the dubious   PSA result and, as I was still having blood in my urine which was still causing concern as I was on blood thinners for Atrial Fibrillation ,  I was asked to consider stopping  taking aspirin instead.

 

I went to see my cardiologist who said it unlikely that aspirin would be any use but the use of aggressive blood thinners was not advised with bleeding tumors so an alternative  treatment was advised.  I am now of blood thinners as I await a Left Atrium Appendage Occlusion scheduled for December 20.  I now have to worry about having a stroke as well.

 

This Monday,   November 12, I got the results of my latest PSA.  It was 3.7 a nearly quadrupling in three months.  It has been decided to stop Casodex  and take Androcur instead until after the heart procedure before reviewing follow on treatment n January.

 

Overnight my waterworks packed in.  I was having bladder spasms every 15 minutes before passing blood.  It was extremely painful   and at 3.30am Tuesday morning I called an ambulance.  The Paramedic gave me a Penthrox inhaler to minimize the pain but I still had spasms and passed blood on the way to the ER.  We pulled over to let me stand and use a travel john three times on the journey.  The ER nurse measured my urine retention as over 750ml and tried to insert a catheter without success.  The ER doctor used more force and succeeded.  I ended lying in a puddle of blood and urine as my bladder emptied. 

 

I was fitted with a leg bag and, after the ER doctor phoned my urologist to advise of this development, was picked up by a friend and was home by 10.00.  I received a phone call from my urologist and given an appointment for Wednesday November 14.   I am now scheduled for surgery on Tuesday November 20 where they will either carry out a TURP to clear the urethra blockage or insert a superpubic  catheter and block off the bladder above the prostate. My tumor will continue to bleed. It has extended to the the outer sphincter muscle.

 

Now I am having spasms every hour or so and passing blood around the catheter which appears to be cause by pressure in the bowel.

 

I have typed this lying on a recliner chair which  my most comfortable position during the day apologize for the numerous typos!

 

[Patrick Turner]

5 hours ago, Brian said:

I asked about Zytega ot Xtandi but was told that they required special approval on the Australian Pharmaceutical Benefits Scheme as they were Chemotherapy.

Hi Brian,

I began had Eligard and then Lucrin injections in mid 2010 after Docs failed to be able to remove PG in an open RP because cancer had come outside the PG and it obscured their view of the nerves and had they proceeded, they would have made a terrible mess of me.

I had EBRT in late 2010, and then more IMRT in 2016 to PG which looked like it might jump to nearby organs.

So far it has not. I have had Cosadex, Zytiga while continuing Lucrin monthly injections.

There were NO PROBLEMS getting Zytiga or Cosadex or Xtandi and nobody mentioned special approval above unless I wanted to change from Zytiga to Xtandi after the Zytiga inevitably failed to keep Psa low. I got wonderful treatment at Canberra Public Hospital. It has not cost me a cent. 

But before I had the "salvation radiation" at Epworth Private Hospital in Melbourne in 2016, I had had a PsMa Gallium68 PET and CT scan that was first available nearby at Bridge Road.

In hindsight, I think you should have had such a scan where perhaps your mets would have shown up clearly, and earlier.

Your Psa seems to be very low, only about 4.0 now. And yet you have serious bothers with pain etc and I can't help but think that perhaps your Pca is not making a large amount of Psa, and therefore the PsMa scan may not reveal all as clearly as it always does with someone making a lot of Psa.

 

I've had 5 such scans and they showed the dreadful extent of my Pca mets which could not all be counted this year, and there are probably hundreds more all growing slowly.

Having any more local EBRT or other intervention on local areas might have been pointless.

After Zytiga failed, I began Docetaxel that had my Psa rise from a lowly 12 to 45 in 15 weeks, or 5 chemo cycles.

Doctors said chemo was failing. They referred me to Dr Lenzo for Lutetium 177 Theranostic Treatment and I had first infusion 10 days ago. side effects have been less than chemo which never troubled me much except for neuropathy which is now fading down. 

I have ZERO idea how well Lu177 might work and I cannot know until more scans are done. But there was only more potent forms of chemo in which I had ZERO confidence and I thought the side effects would have been worse. 

Maybe the chemo killed some Pca cells, but we don't know where that happened. Meanwhile, countless bone mets showed up and it was only a matter of time before the cancer grew big enough to cause bone fractures and intense pains and then I'd have had ZERO QOL. 

 

But I am fully continent, and have cycled 180km so far this last 10 days, and I have been able to do craft work in shed and I'll mow lawns next week.

 My 3 enemies are 

1. Aging,

2. Side effects from Pca treatments,

3. Effects of Pca reducing QOL, so far, hardly at all.

The $40,000 cost of Lu177 which is not covered by Medicare is what I can afford. 

When a man gets old, he needs to use his savings to extend life as long as doctors can arrange.

My health insurance is my bank account. I have never been in a private health fund because to make a profit, you must pay them as well as the doctors etc. Why pay the profits of the insurance companies? And the tax on their profits? 

Pca probably will kill me, and I don't know when. Having a supra-pubic catheter is no joy, and it was mentioned for me if urination got very poor. The section of urethra within my PG would be a real mess I guess, because of the RT I have had. The extra RT I did have in 2016 did not "definitely kill all Pca there" as the big bwana doc had said, because the last 2 PsMa showed Pca activity in central area of my PG, or what is left of it. The Lu177 will be attacking this soft tissue and other soft tissue mets as I type now.

I forgive you all your so called bad typos; you are doing well to type at all. 

 

I knew a man with whom I had lunch with about 4 years ago who was diagnosed with not much Pca, but elected to NOT have RT, RP, or ADT, and his urologist who was same guy as mine offered to remove bladder, cut off uthrethra just above penis, remove PG, and then join his two ureters from kidneys to join to a single exit to a stoma on thr lower side of abdomen and so a plastic bag for urine could be fitted. This way my friend knew he would not be likely to suffer the continuation of Pca after an RP which is all too common, and which leads to years of treatments costing Medicare maybe $200,000 which is about what I have cost Medicare. 

3 years later I contacted my friend and there is NO detectable Psa and his marriage survived, and he's one of the 45,000 Australians who wear a bag for liquids or solids or both. 

One sister I had died at 60 from Oa, and she'd been diagnosed too late, and had a hysterectomy and was told "We got 80%, chemo will get the other 20" and I knew she been told Pure Bullshit because learned scholarly articles online suggested she had a year. The Oa had spread to many places and 4 lots of chemo did nothing, and she died a year later. Unfortunately, Theranostic treatment of Oa with nucliedes and binding ligands had yet to be developed in 2005. Oa is much more of a threat than Pca is now, even with no hope of a cure or Pca. 

After that, I wondered when my turn to get cancer would come and I'd had yearly Psa tests and it finally slowly moved over 5.0 in 2009, but the docs found a Gleason 9 + 9 with aggressive young man's cells. I was 62 but am still alive. Now had the threshold level for PG examination been 3.0, I bet Pca would have been found, but with lower Gleason score and maybe no spread I have now and which I think began before my diagnosis, because that's what a gowing tumor does; it spreads. But 2009 was before PsMa scans and Lu177 was not here, and there was basically ADT and chemo, then get your affairs in order. 

But ADT only delays the inevitable, it sweeps the Pca under the carpet, or iow kicks the can down the road, and sooner or later, the mets have to be treated successfully with systemic treatment to have any chance of getting a worthwhile extension to life. Even Lu177 has a median life extension of only 14 months, and I can only guess that 

even though astounding reduction of active mets has been achieved with some men, its possible that below a certain size, the small mets do not attract the Lu177 and its ligand so those small mets will just grow. As time goes by the mets have increasing mutations that may make them able to survive any possible treatments.

For me, I'd want to know when that point has been reached, and to prepare for my non-existence. I think I am lucky to be able to contemplate such issues at 71.

I cannot live forever. 

Immune therapy holds some promise for the future but effective IT is yet to be available in Oz, and progress of research at Marsden Hospital in UK is somewhat slow and they are not getting a high % for success. But for  few patients they are getting fabulous results, with remission like results. The altered white cells that are pumped back into body can flourish and produce copies of themselves which continue to recognise the cancer as the enemy, rather than reacting to cancer as a friendly cell, as now commonly happens. 

I hope a little to live long enough to get such treatments. 

Meanwhile, I wish your suffering eases down and that the SP catheter site stops bleeding. AFAIK, the urine levels of bladder cause the urge to urinate, and a swollen PG under bladder or other inflammed areas can push up the  bladder, so urge to urinate is more often.

We all have a different journey with Pca. 

My hospital has offered IMRT to painful bone mets and I have heard it is effective to reduce pain but there is a limit to how much you can have, and side effects can be appalling because all beam RT travels through the body and causes some damage. 

I wish you well and hope your doctors reduce your suffering.

Patrick Turner. 

[Brian]

Hi Patrick

Thanks for your concern and support.  I am not worried by the Supra-pubic catheter being fitted but the decline in my general health and energy over the last few months is beginning to depress me.  I miss my daily cycle rides and long walks with my old dog, Louis.  We still manage about 30 minutes twice a day when we meet up with a supportive group of other dog walking friends.  I fill in time reading, listening to music via Spotify and watching TV.  I am naturally a bit of a loner. Since my wife died 8 years ago I have lived alone with my debating companion Louis.  My daughter lives in South Australia and as her partner of over 30 years is recovering from a major psychotic episode can spent much time with me but we talk and text every day.

 

I have been treated privately throughout my cancer journey   and, apart from my GP was being treated as as a senile old man and given little information.  I now research everything and annoy the shit by querying every aspect of my treatment.  My GP supports me in this.  I am a retired Professional Engineer and a Fellow of The Institution of Engineers Australia and worked in the research and development area of defense electronics and computing .

 

My attitude to Pc is the old Australian saying "Shit Happens."

 

Brian

 

[Patrick Turner]

40 minutes ago, Brian said:

I am naturally a bit of a loner.

Well in reality, what man is not a loner when he gets old ? My missus vamoosed 40 years ago, after becoming entirely negative about everything, only 18 moths after we married, and since then I grew quite used to being alone and I think I coped a lot better in many ways without ever having a family. I just haver never needed a woman's support, and was more than capable of doing all the housework and keeping a job, and keeping the house in good shape without anone else knawing my heels and wanting me to go under any thumb. I wanted a wife but would never be a slave, and would not expect much from a woman. I shared my house happily with a succession of delightful ppl and enjoyed some help with bills and cheery smiles, and unless a lady came along and was an improvement to my life then I could feel no reason to marry, bearing in mind how selfish they can be.

 

Maybe you are doing OK to walk 1/2 an hour with Louis twice a day. I have a sister who I get along with OK but my need for daily long contact is just not there, once a fortnight is plenty, and I don't mind having many person-free days, because I can concentrate on craftwork without distractions.

I have been more questioning of doctors in the past, but online research answers most queries. One doc said I should not go online to find out about medical issues because it will make me anxious and confused and I told him that when I speak to doctors, that's exactly what happens.

Some doctors oten don't have time for explaining all things, they are permanently impatient.

But the ones I have right now are not, and explain as good as can be expected.

 

I have never wanted or needed a dog, but I think I'll marry my bicycle soon. Someone asked "why" and I said "well, I can go fer a ferkin ride any 'ol time I ferkin like" and maybe that answered their tedious question.

But after getting my sexuality entirely exterminated by medical procedures, a 2 hour bike ride is somewhat more better than a 2 hour ride upon a nice lady.

Sorry, but I refuse to be serious all the time, and the nurse at my chemo sessions told me, " If youse ain't got a sense of humour in here Patrick, get out..." I thought, OK darling, I will try real hard to be mirthful. Its a sorry place to be, a chemo ward, but for me it wasn't too sorry, and I had a fine old time there. For last 3 sessions I cycled 20km to and from hospital to get the chemo. and I danced with the trolley pole with a drip feed when I went to the loo, "hey my fine nurse, can ya teach this thing to dance a bit better?", I could see the place was gloomy, most are not going to survive long, all were in far worse condition than myself. No wonder the nurses job is difficult, but I felt I was loved real well in hospital, the only place I ver get loved. It'll do, I can't expect any more.

 

My knees prevented me continuing to work as a building contractor after 52, so I taught myself basic analog electronics and became a repair tech and I made many sound systems for ppl. Making other ppl happy is important to one's  mental health good. I dabble now making good amps with vacuum tubes, but don't trade any more with the public which never made me much dough because ordinary little ppl hate paying money for goods and services from other ordinary little ppl. So when I retired in 2012, I declared I was useless to the world at my website, and I was not going to work for anyone any more because the old age pension paid twice as much, and I felt extatically happy not to have to remain in poverty. But I enjoy frugality. A world cruise is something I could afford, along with a Maserati, but the cruise would be Uber Boring, and I'd prefer a bicycle to the Maserati. There is NO happiness in consumerism.

I don't mind spending on docs who offer to lengthen my life.

I'm going to try for a 60km ride soon, across town to have a coffee, and I feel quite weell enough, and if on the way I feel odd, I'll turn around form home, but it seems I have recovered enough after Lu177 infusion 10 days ago, and side effects of the previous chemo are fading down by the day.

I know all about shit happening, but I spend enough time working out how to prevent it. But you cannot stop what Aunty Destiny has in stall for your future. If I did not have Pca, then I'd maybe have any one of 101 other bothers I have seen other guys get. I can't find anyone my age who does not mind a 60km ride, they are so rare that its pointless looking for companions. I do have enough friends though, no enemies, and no debts, and where I live is dreamy compared to Syria or many other alternatives, so I am fairly happy. I don't need or want a mobile phone and have no stupid modern addictions to social media like Farcepuke, or Twatter.

I much like these long telegrams we can send to each other; the price per letter is so much better than the other day in 1958 when they were ten letters per shilling. 

But so many now hate emails, which means they hate communicating, but they think they are superior with the gadgets they have, and puttin on the agony and puttin on the style.......

Keep well,

Patrick Turner.