YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

BRONZE

John Palm lives Queensland Australia. He was 59 when he was diagnosed on 18 February, 2006. His initial PSA was 6.0 ng/ml and his Gleason Score was 4+4=8. He was staged T2 and his choice of treatment was ADT (Androgen Deprivation Treatment) + EBRT (External Beam Radiation Therapy). Here is his story:

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.

John

John's e-mail address is: johnpalm@gotalk.net.au