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This is his Country or State Flag

John Palm lives in Queensland, Australia. He was 59 when he was diagnosed in February, 2006. His initial PSA was 6.00 ng/ml, his Gleason Score was 8, and he was staged T2. His initial treatment choice was External Beam Radiation+ADT and his current treatment choice is ADT-Androgen Deprivation (Hormone) (Monotherapy). Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.

Hello to all, I live in Cairns, Australia. I am 60 yo, single, and was diagnosed last February as a T2, PSA 6, Gleason 8 following the usual route of blood tests, DRE, Ultrasound (which gave me a total "all clear"!) and biopsy. Upon confirmation of the diagnosis, I went onto Zoladex ADT and was placed in the queue for EBRT within the public health system which happened in September/October. I had of course to make the choice between surgery and radiation therapy (RT) which was a very difficult choice. I chose RT as it didn't seem to have the finality of surgery and the likely consequences. I think in retrospect I made the right decision at that time, but when I went for my planning CT, it was found that the cancer had spread into the seminal vesicles so was re-assessed as a T3. This made the possibility of surgery a more doubtful proposition, but I think a treatment review should have been conducted at that time, as I was not told that once there was evidence of spread outside the capsule EB RT was no longer curative, but used as a therapy to buy time. I think if I had been advised of that, I may well have changed to surgery to remove the gland and the vesicles and then EBRT to mop up the rest ... I was told that if I chose surgery, radiation then was not an option, which turned out to be nonsense. Thems the breaks.

Post 37 days of EBRT, I am on Zoladex and the first PSA in early December was 0.68 ng/ml, and I am about to have another. I was told by my treating radiation oncologist that "chemotherapy doesn't work with prostate cancer", and subsequently told that I had used up my treatment options, apart from staying on ADT and when the cancer, which is still alive and kicking, metastasises, then they can give me some palliative radiation to help with pain management. I found this a tad disturbing so it was back to researching on the web. And I found the Prostate Cancer Research Institute education web site, where I found a number of useful papers on the treatment of HRPC (Hormone Resistant Prostate Cancer) before it goes hormone independent, one paper listing a choice of 11 types of treatment. So I am going private health, which will cost a bundle, but I hope it is worth it as I would like to live more than 2-3 years. As a result of the research, I consulted my GP last week and gave him a copy of a couple of the papers. I have an infinite trust in my GP, and again he came through, referring me to a visiting oncologist who specialises in chemo oncology and I have an appointment with him in January.

And I have an appointment next week with a naturopath. From what I have seen and read, naturopathy is more oriented to preventative concepts, but I am open to any suggestion which may prolong my life provided that I can maintain a reasonable quality of same.

So that is where I'm currently at, and will find out more about future options such as Taxotere in January.

Some observations about the process of being diagnosed with PCa which might be of interest to the recently diagnosed or any one at my stage. I said I was single, at the time of the diagnosis, I was wooing a new female friend, but she headed for the hills when she heard the "C" word. Can't blame her for that decision. The consolation is that I have made a few more platonic friendships from people who have become my support group, chief amongst whom is my ex-wife, who is probably my closest friend. It is a good outcome as I have read on a number of web sites of the distress caused by new diagnoses of wives of the men newly afflicted. I have been single for about ten years and during that time have been sexually active in a number of short-term relationships.

I have of course been impotent since starting ADT last March, which I am surprised to find hasn't really bothered me. I have tried a Viagra pill since completing EBRT, and whilst I did gain an erection and eventually an orgasm through masturbation, it was less than a fulfilling experience due to lack of sexual excitement. I surfed some of the porn sites on the web, but it was just ho-hum, no buzz, so I won't be doing that again, but maybe if I was with a woman, it might be different? I still experience a feeling of lust if I see a sexy woman, so maybe there is hope.

A last word. The DRE, which seems to bother a lot of men. Fairly natural, as men are not used to invasive examination, whereas women become exposed to it (medically) from a relatively early age, and is a continuous process during their adult lives. To any men who have a thing about it, relax, and just be glad you don't have throat cancer!

To the newly diagnosed readers, I have ticked the box about being willing to be a mentor. It a stressful time and shortly after my diagnosis I was prescribed Citalopram to overcome stress related skin reactions. I am now on double normal dose which is just keeping it under control. Talk to you GP about anything that you think might be a side effect or a new problem.

A (further) final word. I saw in the last few days a post to a support site which said that men sometimes make light of PCa. I was the same, indeed telling an acquaintance that if you are going to get cancer, PCa is the one to get as it is curable and "most men die with prostate cancer, not from it".

I have come a long way since making that statement.

JohnP

UPDATED

February 2008

In response to my reminder about an update in February 2008, John had this to say:

Woooh, you are right I have moved on considerably from those days and the news is pretty well all good both physically and mentally. I will post an update and answer many of the (implied) questions I was posing to myself at that time. Give me the weekend though please as I seem to be continually busier than a one-armed wall paper hanger.

UPDATED

March 2008

March 2008

When I read what I posted back in late 2006, I am not surprised that I needed anti-depressants, as it was clearly written when in a dark mood with depression and anger clearly showing through.

I did see the private oncologist and he told me that in his opinion I had had the best of care, and that I could expect to live for a very long time. I didn't believe him so continued for another 6 months to privately rail against my (imagined) plight.

I have had scares. I found that stretching out my left foot caused a fairly severe pain. My GP said that it was probably arthritis, I was convinced it was bone cancer, an X-Ray proved it was neither, and it has since gone away.

And then I discovered a lump in my groin which just had to be lymphatic cancer. About $1,200 later, I am currently recovering from surgery for a femoral hernia.

The turning point in my attitude came with a jolt a month or so ago when my surgeon for the hernia repair said to me that whilst he respected my sensitivity to any changes in my body, I was being paranoid about the return of secondary cancer. That set me thinking again and I think he was right. A follow up visit to my oncologist and another DRE confirmed it ... no evidence of capsular infection, agreement that I could stop Zoladex therapy sometime over the next year ... I have decided that I will put a stop to it after the June shot ... to be sure to be sure.

I feel great, with the prospect in 18 months or so having my testorone level return to normal. I am also weaning myself off the AD drug, as I don't feel as though I need it anymore.

Am I cured? I dare to think so.

If however I'm not, I am not going to worry about it, and am pressing on with life.

UPDATED

June 2009

Stopped ADT (Zoladex) as forecast in my last update in June last year, and my PSA remains almost negligible.

Also weaned myself off anti-depressants at about the same time. Scary things, I found myself having fits of rage over the most trivial of matters, these stopped after cessation of the drug, and I have reverted to my normal placid self.

Life since has been pretty good, new lady in my life, and recently a new job ... back to management which I had despaired of ever again achieving at age of 62.

A year on from ADT cessation, my libido has improved but there is still a way to go yet. In the interim, I am able to keep my lady happy with non-penetrative sex. I can achieve orgasm, but damage to the seminal vesicles makes it a dry and less than comfortable event, so don't bother about it except on rare occasions when I get very turned on.

But hey, I'm alive, happy in my work and in a stimulating relationship, and I rarely think about PCa. Can't ask for more than that!

John

UPDATED

November 2010

PSA on the rise again, it was 0.06 a year ago, now 0.96 which my oncologist says is an indication that there is still some residual cancer, but DRE indicates it is still within the capsule. Intervention in the way of another round of hormone suppression is recommended when the PSA gets to 2.0, and I will probably go with it. For any readers, it is important to know that the PSA number is almost irrelevant, of far more importance is the trend. Doubling the number in a year is serious, but in my case a significant increase was not unexpected as I had stopped HRT.

On the personal front, the relationship I wrote about last year is now a pleasant memory, the lady wanted more than I could offer so we agreed to part ways. I am still masturbating but it is really a hollow experience, so going back to hormone suppression is not a big deal, and my preference is to stay alive and kicking for a while yet.

I am still working full time and loving my job, but thinking about "transition to retirement" after I turn 65 next year, a process which I think will take about 5 years. And in the meantime, I have a joint venture with my bank in a 6.4m boat which is a good deal. I give them money and I get to go fishing. As I live in Cairns, it can't get much better. [For non-Australians, the motto of Queenslanders, which is where Cairns is, is "Beautiful One Day: Perfect The Next." Those of us from the South of the country don't necessarily agree:-), but it is pretty good up there in the Far North.].

John.

UPDATED

April 2012

Almost 6 years on from Radio Therapy and 2 years of ADT, my PSA has jumped in a year from 1.6 to 3.0. I have recently had a full body bone scan and a abdominal/pelvic CT scan which didn't reveal any detectable cancer, so the residual cancer floating around my body is still at a micro level. My oncologist's recommendation is to watch and wait until the PSA gets to about 15 and then I should undergo a new round of ADT which should knock the PSA back to close to 0. If that works, I should be able to live for many more years.

Of more serious concern is that I was diagnosed with COPD (Chronic obstructive pulmonary disease) a year ago. I stopped smoking immediately (after about 45 years) but I think it was too late as I am having increasing difficulties with breathing.

UPDATED

November 2012

November 2012, PSA back up to 6, having doubled in a year. With the completion of the Cairns Oncology and Radiation facility, I have a new Oncologist based in Cairns rather than a visiting specialist from Townsville. New guy "Josh" seems pretty switched on, and unlike previous advice will only reccommend hormonal intervention once my PSA gets to 15 - 20 which gives me another year or 2 before going back to Zoladex if I should so choose.

Trying to expand my social interaction, I submitted a profile to the RSVP dating site detailing all the nice things about me but adding that I was unable to be the real deal when it came to sex. Naturally I was totally underwhelmed by responses. I contacted a woman who stated her interest was "friendship with a male", but she turned out to be a looney.

I did receive one response, but we have yet to meet as she seems to spend all her life working. However, through the site I have "re-connected" with a lady friend after 3 years of only dealing with myself as best I could with limited ability. I really do appreciate her being back in my life, even if fleetingly as she continues her search for a more full-filling relationship than I can offer.

UPDATED

April 2013

April 2013, PSA in January was 7.6 up from 6 in 2 months. Another new Oncologist has me now on 3 monthly PSA checks, just had another but no results as yet. I like my new oncologist, she looked me in the eye and told me bluntly that in view of the increasing PSA, I have re-developing cancer which is now incurable. Even though I knew that, it still took me a few minutes to get my head around that one, but I appreciated the frankness of the assessment. So now I get terrified every time I wake up with a minor back ache.

New lady in my life in the last update has gone, which is good in a way as it means I can take a decision about renewing ADT without it having an effect on another. Interesting however that medical thinking seems to have been changing. My original onco said PSA limit before an HDT reccomendation was 3. Next onco said 15, current says whenever I feel comfortable with it, worth waiting until the newly forming cancer finds a home and using a combination of palliative radiotherapy and HDT, adding that she would however feel uncomfortable if my PSA exceeded 50.

I will delay HDT as long as possible, it is nice having a libido, even if very limited in capability and not have anyone to share it with.

UPDATED

June 2014

June already, how time flies when you are having fun. PSA 24 up from 8 a year ago. Urologist wants me to start HDT, am seeing the Onco later this month, but his opinion from previous consults will be the same. Lots has happened in the last year. After a COPD diagnosis a few years back, woke up one Sunday night in August last year wirh a severe chest pain with every breath. Ambos and Cairns Base hospital emergency staff were fantastic. Confirmation of emphysema and double pneumonia. Getting back to normal by early this year, I went on a tour of Vietnam with a very dear friend. Great experience until I caught the flu which one of the tour members had bought with him on tour. I managed to get back to Australia to spend another 10 days in hospital in Brisbane with another dose of pneumonia. During that time, my urinary system decided to shut down which is a very uncomfortable experience. Back in Cairns with catheter in place some days later, enter the Urologist into my care team. TURP a week later on the assumption that I had BPH. Two outcomes. There was some prostate enlargement, but not as much as expected, although a scrape out allowed me to resume toilet function in a limited manner. Main problem with the system was found to be the emergence of radiation damage to my bladder. Biopsy from the TURP also showed 25% malignancy which is high as it was from the centre of the prostate, but no aggression analysis because of radiation cell damage. Puts to bed as nonsense continued assertions by the radiation oncos since 2006 that there is no cancer in my prostate because of the radiation, it has to be in my bloodstream which has always been the scary bit because of the Meta word. I was also assured prior to radiation that there would be minimal collateral damage because of directed radiation beam technology. To be fair, guess that they did the best job they could do with the technology at that time, but I don't know whether it has got any better. Last, I am still alive, wake up every morning which is a good start to the day. The fragility of life however was bought home to me a few weeks ago when as I was discharged from hospital after my TURP, my son in law was admitted the next morning having suffered a massive carotid artery stroke during the night, he was pronounced dead 5 days later in Townsville hospital. Vale Jason Bender, son in law and friend.

UPDATED

July 2015

Another year down the track, and it hasn't been good. Emphysema has worsened little by little, and long periods of steroids have probably helped my latest diagnosis today of low bone mass in my spine and osteoporosis in my hips, causing my instant retirement from all forms of contact sports and marathon running. As if.

Late last year I also ran into urinary problems and bleeding from my bladder. The latter was eventually found to result from a blood imbalance as a result of an urrmonitored blood thinner which was corrected by going back to Warfarin. The former was diagnosed as BPH so had a TURP which showed my bladder to be becoming degraded (scarring) as a long term (so I'm told) result of radio back in 2006. I also asked if a solution was to have the prostate removed but was told it was not surgically possible to identify bits and pieces as radio had fused everything together. Just a few more things I wasn't told about by the radio oncologists back in 2006.

The TURP material was biopsied and shown to be malignat but not possible to grade. The TURP did however have the curiuos result of lowering my PSA from 18 in December last year to 12 in March. Short term benefit as the PSA jumped to 38 in June, So back to Zoladex ADT as of 3 weeks ago, fortunately without side effects. Life goes on, bone scan this week to see if any of the prostate cancer has landed elsewher and the the next round will be a PSA in August to see if ADT is working.

John's e-mail address is: jarep46 AT optusnet.com.au (replace "AT" with "@")

NOTE: John has not updated his story for more than 15 months, so you may not receive any response from him.


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