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New video: How Mal and Alison cope with advanced prostate cancer

JimJimJimJim's picture
JimJimJimJim
Posts: 2
Joined: Jan 2017

Mal's story

 

I have just made this video (with my 12 year old grandson) about how Mal and Alison have found a lovely way to deal with 11 years of prostate cancer (5 years with metastases) and other problems of life.

It is 5 minutes long and has Closed Captions (Cc) for the hard of hearing.

 

Click the picture or click here.

If you find it useful, please let others know about it.

Jim

 

Jim

Will Doran
Posts: 207
Joined: Sep 2015

Jim,

Thank you.  This is very inspiring.  I hope my wife and I can keep up with this same attitude that you have.  We have been trying to do so.  I am a three year survivor at this time, but have a constant feeling that this "beast" is still hanging over my head and will be for as long as I have left.  We try to live one day at a time.  Enjoy the good days, and then back off and take it easy on the rough days.  At this time I have more good days than rough days.

Thanks again

Love, Peace and God Bless

Will

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Jim,

Welcome to the board.

I read in your "my Page" that you did HDR brachytherapy and hormone therapy in 2009. This combination treatment is rarely discussed in this board. Can you provide details about your initial diagnosis and the protocol used in the treatment? What was your PSA before restarting HT?

Best wishes,

VG

JimJimJimJim's picture
JimJimJimJim
Posts: 2
Joined: Jan 2017

Vasco

I keep my story updated on:

<a href="http://forums.jimjimjimjim.com/index.php?/topic/126-my-story-jim-marshall/">My story - Jim Marshall</a>

But as of 10 February 2017 it read:

 

Prostate cancer report for Jim Marshall
Last updated 11 July 2016

 

In short

Jim had 4 years of continuous hormone therapy:

    •    8 months before radiation;

    •    4 months during radiation; and

    •    3 years after the end of radiation.

Hormone therapy is also called ADT (androgen deprivation therapy).

After 3 years of undetectable PSA, Jim took a break from hormone therapy.

This break lasted 2 years, but the PSA started rising again, so Jim is now on hormone therapy again.

 

In detail
Diagnosis
PSA (Prostate Specific Antigen) began rising in 2009 to a maximum of 7.7ug/L.

PSA level in itself is not significant, but sudden sustained rises may indicate cancer.
2 June 2009
A renal ultrasound revealed a pattern in the prostate "typical of a large cancer mass".
22 June 2009
12 biopsy samples were taken from all over the prostate under anaesthetic.

7 of the 12 samples contained cancer.

Under the microscope the haphazard nature of cells in the samples showed a very aggressive cancer (Gleason Score 9 on a scale of 1 to 10).
26 June 2009
Bone scan x-ray revealed no large metastases in the bones.
(Small cancers cannot be seen in bone scans.)

CT scan revealed that no lymph glands were significantly larger (as they would be with large cancers in them).
(Small cancers in lymph glands cannot be seen on a CT scan.)
24 July 2009
MRI scan revealed that the cancer had grown through the prostate wall in two places, including around the seminal vesicles, but not into any vital organs.

On various rating scales this means the cancer would be rated Locally Advanced, T3b, Stage III, Stage C, or Very High Risk.
Treatment
Before treatment was started Jim consulted with three surgeons and two radiologists.
19 August 2009
Androgen Deprivation Treatment (ADT, hormone therapy) began.

ADT1 was recommended (Zoladex), but I chose ADT3 (Zoladex, Cosudex and Avodart).

ADT3 may be a little more brutal, but may help me last a little longer.
17 February 2010
PSA 0.02 ug/L - a level rated by practitioners as 'undetectable'.

This means that the androgen deprivation therapy had driven the cancer into remission.
23 February 2010
High Dose Rate (HDR) brachytherapy 3 x 6.5Gy.

Highly radioactive Iridium-192 was allowed to sit in various positions in the prostate for a few seconds at a time over 36 hours.

Unlike conventional brachytherapy, no seeds are left in the prostate.
15 March 2010
RapidArc IMRT/IGRT external beam radiotherapy (EBRT) - 23 daily sessions x 2Gy over 5 weeks.

(An X-ray machine rotated around Jim focusing its beams on the prostate, guided by four gold seeds implanted in the prostate by the surgeon.)
9 August 2012
Ceased Avodart (Dutasteride) after encountering a study suggesting greater kidney cancer risk.
Resumed shortly after after finding that only 1 man in the study had developed kidney cancer.

2 May 2013

Ceased Zoladex 

Ceased Cosudex

Continued Avodart

I am taking a break from hormone therapy. This will probably be the one and only break.

8 November 2013 - 7 May 2015

Testosterone 0.7 nmol/L, 1.7 , 2.3, 2.4, 3.1, 4.4, 5.1, 5.6, 4.4, 4.5, 5.6, 6.3, 5.8, 8.0, 8.1 nmol/L

At some time in this period (probably late 2014) I ceased Avodart (Dutasteride) after learning that it only had an effect during a short period while the testosterone recovered.

7 May 2015

PSA 0.021 - apparent recurrence. Two more monthly PSA rising tests confirmed recurrence.

6 June 2015 

PSMA (Prostate Specific Membrane Antigen), Gallium-68 scan confirmed recurrence in the base of the prostate.

3 July 2015

I declined salvage radiation and salvage surgery.

I opted instead to continue with hormone therapy, this time on Firmagon (Degarelix) monthly.
11 July 2016

PSA 0.009 ug/L

Testosterone <0.5 nmol/L

The cancer is back in remission.

Latest
10 February 2017

PSA < 0.008 ug/L

Testosterone <0.5 nmol/L

The cancer is still in remission.

Analysis
Radiation damage to the prostate (and nearby bladder and bowel) happens both immediately (acute) and over the next 1-3 years (late).

I am left with no residual problems of either acute or late damage (i.e. I am continent, no problems with bleeding.)

The very high risk means that the cancer will most likely return and spread.

The very low PSA achieved is a good sign that any return or spread has been delayed, perhaps for years.

My plan was to continue on ADT3 to make the delay as long as possible.
How am I?
I haven't ever experienced any symptoms of my cancer that I can notice - not even the classic symptoms of problems with urinary flow.

Except for reports from pathologists on scans, and blood tests or biopsy samples I would not know it was there.

So the only symptoms I am aware of are the side effects of the treatment.

The most intrusive of these is fatigue - easily overcome with an occasional extra nap.

For anyone who is still worried, I can best quote from the beginning of John Yaxley's (my surgeon) letter to John Feros (my lifelong friend and GP).

John Yaxley's style seems more suited to references:
"James is in excellent spirits with a strong urinary stream and no incontinence."

Risk factors

    •    Gleason score 9

    •    Positive cores 7/12 (58%) (6/6 x GS9 one side and 1/6 x GS7 other side)

    •    PSA rise of more than 2 in the year before diagnosis

    •    PSA doubling time of 8 months before treatment

    •    Renal ultrasound typical of large cancer mass

    •    MRI shows probable extra capsular extension at left midgland laterally

    •    MRI shows probable extra capsular extension at left base in midline surrounding seminal vesicles and ejaculatory ducts

    •    J-Pouch relationship to prostate makes operation too difficult, may complicate radiotherapy

    •    Prostate pulled from normal mid-line by previous surgery

    •    J-Pouch bulge has weakened small bowel walls - perhaps easily damaged, hard to repair

    •    Shape of abdominal cavity and over-stretched remaining small bowel may impede success of later needed repair surgery

    •    % Free PSA 11.1% at diagnosis (High risk if less than 15%)

    •    Radiotherapy used narrower margins than normal to avoid bowel damage. (Normally there is some radiation spread around the prostate, which may get a few cancer cells on their way out.)

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Jim:  Thanks for the details of your story.  I'm sure it will be useful to many. 

Old Salt
Posts: 720
Joined: Aug 2014

Yes, that's a very clear report of your fight. Well done, in more ways than one!

And congratulations with your most recent PSA result.

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