GREG'S LEGACY

Specialising in the human experience of Living with prostate cancer – warts and all

If I could turn back time – PCa Diagnosis

with 11 comments


It has taken me more than four years of living with Prostate Cancer to be able to offer advice aimed at those at risk and those newly diagnosed with the disease.

In particular, it is aimed at my son David as he is in the high risk group with a family background of PCa.  His father has it – that’s me.  My father died of it as did my grandfather.  In his mid forties, it is time for David to start monitoring the condition of his prostate.

I should ask him:-

  • If his PSA was high or a DRE found enlargement, would he want to know.
  • If he was recommended a biopsy, would he have it
  • If he was diagnosed with PCa, how would he react

When I was his age, I was so into living that I did not need or want to know  if my future was threatened.  I would not have listened to such doomsayers.

They say, ignorance is bliss.  Is it really?

FACT: Those with a family history of PCa have a higher risk of getting it than the general population.

FACT:  In the absence of symptoms, the only guide leading to diagnosis is the PSA blood test and if warrented, the Digital Rectal Exam (DRE).  Current diagnosis of organ-confined prostate cancer

FACT: The only way to diagnose PCa is with a biopsy.  The PSA test and the DRE only indicate a need for a biopsy.

There is a new diagnostic test based on a urine sample taken immediately after a DRE called PCA3.  I am not aware if it is available yet here in Australia.

Look into the PCA3: a gene-based test to help deciding if biopsy is really needed

The Prostate CAncer gene 3 (PCA3) Assay is an additional tool to help decide if, in men suspected of having prostate cancer (PCa), e.g. those with a PSA between 2.5 and 10 ng/mL, need a prostate biopsy to diagnose PCa.  It discriminates better than PSA between cancer and benign/non-cancerous prostate diseases.

FACT:  If a biopsy is called for, don’t do anything until you are happy with the proposed procedure as there are different biopsy methods.

In performing a standard biopsy,  the doctor inserts a needle through the rectum into the prostate to remove small tissue samples from different regions/cores (usually 6-12) of the prostate. The tissue samples are then examined under a microscope to determine whether cancer is present. The patient often can return home the same day the prostate biopsy is performed; hospitalisation is seldom required. However, discomfort, pain and complications such as infection and bleeding may occur.

Ultrasound is a non-invasive biopsy tool that may help avoid the need for a biopsy.  Prostate ultrasound involves a probe about the size of a finger that is inserted a short distance into the rectum. This probe produces harmless high-frequency sound waves, inaudible to the human ear, that bounce off the surface of the prostate. The sound waves are recorded and transformed into video or photographic images of the prostate gland.

Another option is MRI diagnosis that does not carry with it the considerable side effects of needle biopsies. (watch video)

FACT:  Don’t rush.  Time is on your side.  Prostate Cancer is slow growing so you have ample time to do your research before submitting to any procedure.

If you are diagnosed with PCa, pray that it is early on when it is contained within the prostate.  Whilst it is contained, it can be removed and you will no longer have PCa.  That, howeever, does not vaccinate you against ever getting it again. Once it escapes, you cannot ever get rid of the cancer.

In my case, it was far too late … too late for surgery … too late for curative radiation … and too late for chemotherapy.  The only available treatment was Hormone Therapy or ADT and you don’t want to go there if you can avoid it.

If I could turn back time … I would not have listened to my doctor nearly ten years ago when he talked me out of having a PSA blood test.  He said that it proved nothing.  It is just a measurement of the PSA TODAY.  If I had insisted when I asked for it, it would have been caught before it metastasized into my bones and I would not be sitting here writing about prostate cancer.

… but I can encourage David to start monitoring his prostate health … and I will.

How high can it go?

 

UPDATE:

Four weeks ago, my PSA was 3400. 

Today it came in at 4600. 

Where does it end?

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Written by Greg Naylor

13 July 2012 at 12:00 am

Posted in Greg Naylor, information, psa

Tagged with , ,

11 Responses

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  1. I had NO symptoms, and my original doctor did not do PSA’s because the Government told him not to.
    A Change in doctors, saw an immediate “Getting to know you” blood test, that showed a slightly elevated PSA.
    A DRE was negative, but a Biopsy returned a Gleeson6 PCa report…
    How much time do you have to make up your mind?? Do you wait until the PSA shoots up..??
    I had a Radical and the cancer was worse than expected.. Again – How long do you wait..? I AM PCa free now.
    My brother got nervous, because of MY cancer.. He had regular PSA reports, and they were ignored, until MY cancer was found.. The doctors then acted and he too had a Gleeson7 PCa..
    The ultimate dilemma – How long do you wait, when your surgeon declares “..act now and I give you a 95% guarantee of total cure..”
    How long do you wait..? Is the cancer completely contained, with generous margins..?
    At least , a quality MRI might give better indications.
    Every man I know has said – “..and all we wanted was for that C to be out of MY body..”

    Peter

    13 July 2012 at 12:17 pm

    • Hi Peter,

      Your case highlights the confusion amongst our doctors with PSA testing and their follow up. Its disgraceful, isn’t it?

      The desire to get that ” … C to be out of MY body..” is normal. However, my urologist tells me that some men do themselves more harm than good by asking for everything that is going to eliminate the cancer (surgery, chemo, radiation, the lot).

      When I say “time is on your side”, I am not suggesting that you should wait indefinitely but long enough to investigate the options. As you said, “a quality MRI might give better indications”. An ultrasound, CT scan and MRI can all be done before submitting to a biopsy which usually has unwanted side effects.

      Prostate cancer is slow growing and a month or even two is not going to tilt the scales of treatment options.

      Greg Naylor

      13 July 2012 at 12:49 pm

    • PS — Buggar the Government..!
      Whilst – A single PSA report has some meaning..
      A series of them tells a story.. It is more the rate of change that will indicate the potential problem, but you have to start.. If the PSA is very normal, then you might refrain for some years.. If your first is a little generous, then you keep a closer eye on it, especially if you have no symptoms in the “Water-Works” department.
      Greg now knows that that PSA report 10 years ago, would have told him a great deal.. I wonder how well his doctor sleeps, knowing that his stupid beliefs, cost Greg so much..

      ses.library.usyd.edu.au/bitstream/2123/6835/3/Let-sleeping-dogs-lie.pdf

      This is an interesting booklet.. It is written to convince men to NOT have PSA tests..
      PROBLEM – When you know MY story and many like me, you start to wonder who is right.
      The doctor who wrote the booklet was clearly assigned to present the Government’s side of saving money.
      Read this booklet – The details seem very representative..
      Take special note of the comments comparing Radical Surgery, Vs Radiation (of any form) Radiation BURNS and Destroys, and it can take 2 years to show all effects.
      The bottom line is that within 2 years , all men are in the same boat.
      The RADICALS start off bad and generally improve, and the Irradiated, start off fine and then down hill.. and then they live with the thought “Radiation Causes Cancer”
      “”The BEIR VII or seventh Biological Effects of Ionizing Radiation report on “Health Risks from Exposure to Low Levels of Ionizing Radiation” reconfirmed the previous knowledge that there is no safe level of exposure to radiation—that even very low doses can cause cancer. Risks from low dose radiation are equal or greater than previously thought. The committee reviewed some additional ways that radiation causes damage to cells.”” (http://www.nirs.org/press/06-30-2005/1)
      Once you have radiation, surgery is no longer an option..
      If you have surgery, radiation is always an option.

      Peter

      13 July 2012 at 1:08 pm

      • “””When I say “time is on your side”, I am not suggesting that you should wait indefinitely but long enough to investigate the options”””

        How long is enough..?
        I explain.. My first U-Doc said that I could cut, or burn, or wait (Watchful Waiting), but added “…but, most men find that anxiety builds , and within 2 years declare – Get the bloody thing out…”
        I waited for some months whilst trying alternatives..

        A New-U-Doc said “…I would give you three months to act..” — I finally acted and then said, “..Did we make it..” and the response was “..Only Just.., another few months and it would have been outside the capsule”
        EVERY man is different, but the anxiety is always the same.. How long do I have..?

        My Belief – No matter what choice you make – the ultimate result will be the same..
        At two years, we are all the same – lamenting what we have lost, but proud to say “..It’s ZERO.. Thank God..”
        I know a number of men who had radiation, 10 to 15 years ago, and then their fight started again, but this time, it was down hill, all the way.

        Greg – I admire you for your frankness, and my only wish- that ALL men were reading your story..
        I am in a unique position in that I get into many homes and talk to men, and I know that we are not alone, and yet the Government position is that PCa is no more “Life-Threatening” today than 30 years ago
        — BULLSHIT…
        PCa has become an epidemic in men and it can only get worst, and we can look at our food, as the cause..
        ..
        .

        Peter

        13 July 2012 at 1:30 pm

        • I wonder how well his doctor sleeps, knowing that his stupid beliefs, cost Greg so much.

          I have thought of letting him know – maybe I will now that you have raised it. you have summed up the post treatment results well, Peter. I shall read the booklet ‘Let sleeping dogs lie’. Does it mean do nothing or that the system is lying. Are you in Australia

          Greg Naylor

          13 July 2012 at 2:35 pm

  2. Greg: Great post and I see it has prompted some interesting views from Peter. Peter thanks for your input on this subject. Is it not interesting that the three of us in this debate have an issue regarding the use of PSA testing as a guide to early screening. My Urologist believes my PCA is at least 10 year old which begs the question for me If I was tested for psa back then could this thing have been dealt with when it was not as agressive. It makes me wonder how many men have been diagnosed with advanced PCA and have succumbed to this freakin disease who may have been cured if proper screening had been in place. Then again how many men would take screening seriously with the male attitude that most of us have of she will be right mate. Education needs to be stepped up to correct these attitudes.

    Lee aka Popeye

    Lee Gallagher

    15 July 2012 at 12:24 am

    • “””Is it not interesting that the three of us in this debate have an issue regarding the use of PSA testing as a guide to early screening.”””
      It’s interesting how the Govt. gets at doctors.. I try to be Health-Pro-Active.. I happily go to different doctors, when “I” want something..
      One asked me if I minded being phoned, when the inspectors??? tried to tell her that she should not be ordering PSA tests.. She know bloody well, my story, and refuses to ever be accused of towing the line and say “PSA tests are meaningless”..
      How dare they..! Would they dare say to a woman, “Forget the Pap-Smear” or don’t worrie about that breast lump.
      I seem to have lost a post here – Greg, do they go into limbo at times

      Peter

      24 July 2012 at 4:35 pm

      • I rescheduled it to a later date. Do you want it back now?

        Greg Naylor

        24 July 2012 at 4:53 pm

        • That explains it – I wondered what happened – Peter

          Peter

          24 July 2012 at 5:42 pm

        • Peter, there is a new post tomorrow and every 3 days until I run out of topics. Would you like to write a few?

          Greg Naylor

          24 July 2012 at 6:44 pm

  3. PS — “””An ultrasound, CT scan and MRI can all be done before submitting to a biopsy which usually has unwanted side effects.”””
    It can be most confusing..
    I had the DRE – All fine – Non-Palpable – so the Biopsy (Bx)- “Just-In-Case” – I very nearly said NO… I was convinced he only wanted the BIG money from the Bx
    During the biopsy they used Ultrasound – They said all looked great via the ultrasound, but the Bx came back Gleeson6
    I started with a CT-Scan… NOTHING visible.. NEVER had a MRI, as it seemed pointless at that stage.. I knew it was CANCER… Just had the usual Bone-Scan to check for mets..
    “””My Urologist believes my PCA is at least 10 year old which begs the question….”””
    Interesting observation – I asked the same question and was told the same thing, after the removed prostate pathology came back as Gleeson7…
    I was just SOoooo lucky.. Someone was looking after me..!
    ..
    .

    Peter

    24 July 2012 at 2:55 pm


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