Neville Black - My Life Takes a Detour

[Nev Black]

Neville Black - My Life Takes A Detour

I was born in Warwick Queensland 1946.

Married to Lyn. We have 4 children and 4 grandchildren.

Local Doctor in August 2008, who was only at the practise for a few months, requested some routine blood tests and as a result was concerned about some kidney function.

 

I was then referred to one of the Urologists in Toowoomba with an October 2008 appointment.

He was not concerned about my kidney function as he considered the Blood Test was normal for my age. A PSA (4.8) was included with the August results. That result did not concern either Doctor at the time. While I was there he took the opportunity to get a second opinion and performed the dreaded DRE which seemed normal except for small enlargement.
I had known for almost 30 years I had a slightly enlarged prostate. There was never any mention of biopsy in all of that time. (I am not suggesting the outcome may have been different anyway).

After a bit of indecision the Urologist decided for me to have a further PSA test in early January 2009.

The new PSA test in January 2009 (5.4) caused enough concern to perform a Biopsy. (Didn’t know until that day there was such a thing for the prostate).

February 2009 a Biopsy was performed.

March 2009 biopsy results, Gleason Score 8.
The day I got the result of the biopsy I decided to have a Radical Prostatectomy instead of Radiation. I made this decision on the basis that I could have Radiation after surgery but I could not have surgery if I had Radiation first. I am now aware there are numerous people of the opinion anyone with a Gleeson Score of 8 or higher should not have a Radical Prostatectomy.

On this momentous day I came home and went to the internet to search for Prostate Cancer Support Groups. As it happened there was a meeting in Ipswich that evening. I missed the much closer to home Toowoomba meeting by two nights. As a consequence my wife and I have been regular members at the Ipswich Group Meetings for the last two and a half years.

The convenor Terry Carter, Len Lamprecht, Noel Turner and the group members there have been a wealth of knowledge and moral support.

April 2009 my Radical Prostatectomy was performed with clear margins (the illustrations that I was shown looked as if the margins in some areas must have been very slim indeed). I was scheduled to be in hospital for five days but after twelve days I decided I had been there long enough and talked the Doctor into letting me come home. That was probably not a smart decision, as I had a catheter and a drainage tube still inserted. The Cystograph showed a small leakage from the bladder which is why I still had the catheter. The catheter remained inserted for a further nine days and the drainage tube for a further six days after leaving hospital.

The guy that had his Radical Prostatectomy one week after me, with the same surgeons, had gone home in the 4-5 day time frame that I was hoping for. Sometimes it is better to be born lucky rather than good looking.



June 2009 PSA Test - 0.01

September 2009 PSA Test – 0.03

November 2009 PSA Test – 0.16

December 2009 PSA Test – 0.17

March 2010 PSA Test – 0.48

August 2010 PSA Test – 1.8

December 2010 PSA Test – 3.4

4.04 2011 PSA Test - 8.1

April 2011 Bone Scan – Metastases Proximal Neck of left Femur & MRI showed irregularity of the Lymph Node in the right Pelvis

April 2011 commenced Cosudex for 28days

May 2011 commenced Eligard Hormone Injection (a month dose)

June 2011 – Eligard Hormone Injection (a month dose)

14.06.2011 PSA Test 0.03

July 2011 – Eligard Hormone Injection (a three month dose)

October 2011 – Eligard Hormone Injection (a three month dose)

October 2011 – Bone Density Test & X-Ray of the Thoracic Spine

November 2011 PSA Test (result unknown)

I feel periodical motivation is always good. Saw Dr Charles 'Snuffy' Myers in Brisbane on the 10^th February 2010 and you cannot come away from a presentation like that and not feel positive about the future.

I also went to the PCFA Conference at the Gold Coast Convention Centre in August 2010. This was an amazing three day event that provided extremely positive vibes. This event was a credit to the organisers. Even though my PSA was rising at a doubling rate that you only hear about in other people, I come away from the conference and told my wife,’ I will live another 20 years’.

I had a stint on the Magnetic Chair. The one that seems like it has a mini jackhammer inside of the seat. I had about 28 sessions over a 14 week time frame – May, June, July and August 2010. My incontinence was slowly improving up to about September 2010 but from my experience I cannot confirm if the chair was of benefit or not. It then deteriorated due to common cold coughing and tiredness late in the day after work. So an Advanced Male Sling was agreed as a viable alternative.

October 2010 the Sling was fitted. While it was quite sore for a few weeks postoperative it has certainly been a great decision from my point of view. For anyone having this procedure it is imperative to follow the instructions of the Doctor and the manufacturer. I should have had the operation earlier.

Although I can honestly say I haven’t been depressed by this journey to date. I do have a loving, supportive wife and family. I live and associate with positive people.

To sum up I cannot put it any better than Tony Max-My Prostate Cancer Journey dated the 16^th August 2011 and I quote ‘ While we depend on the technical expertise of the doctors as prostate cancer patients we have to manage our own illness as well and the support groups can help greatly with this’ end quote.

 

It is just over two years since my first posting.

I said in that posting - my life takes a detour. Well, it may well be a detour from where I thought I was going.

However we are all aware, I am sure, that this is no longer a detour it is in fact our highway into the future.  

 

In my first posting I said I had an Advanced Male Sling fitted in October 2010. This has been a huge success for me to date. It can be a bit more difficult for men where radiation has been involved I believe. Talking to other groups of men it is surprising how many men endure incontinence. It is possibly more surprising how many men have never heard of the Continence Aids Payment Scheme (CAPS). Please ask your doctor if you have incontinence.   

 

In my original posting I was waiting for my November 2011 PSA test results which I am happy to report was <0.01 (S&N)

My oncologist was suggesting I go intermittent with the hormone treatment (Eligard). Considering we had observed the PSA rise so rapidly, and metastases had developed, I elected to go continuous. I also changed the oncologist.

 

When I suggested Stereotactic Radiosurgery in America to the new oncologist I got the very firm impression he thought it was a waste of time. He also gave me the firm impression he was not the slightest bit interested in me having anything else other than Eligard prescribed at this time.

I have an appointment with a new medical oncologist in April 2014.

I have a Bone Density Test each fifteen months and I am due for another one now. I did have one outside the Medicare system, with PhD students, at UQ in Brisbane at the end of last year.

 

The blood test that I have include, B12   FBC   PSA   ELFTS   Testosterone   Vit D  and   Folate

 

I try to have my Eligard injection each twenty eight (28) days now rather than just once a month. As we are going on holidays for a couple of months shortly I will have a three month injection (84 days).