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Graham (Gragra) story


Gragra

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This started in October 2015, with a routine visit to the GP. This was to get another script for my blood pressure medication but also decided to get bloods checked as I hadn't done that for 3 years. Back then everything was fine and I had a psa of 2.6. You can imagine my surprise when I received a phone call from the nurse to make another appointment to discuss my blood test results. Everything else was ok except my psa which was now 26. My GP did a DRE (couldn't feel anything) and sent me for an ultrasound to look at my prostate, bladder, & kidneys. All seemed ok. The next psa result 2 weeks later was 31 so he referred me to a Urologist. The Urologist could feel something on the left hand side of my prostate, but to make sure the raised psa wasn't due to an infection he put me on antibiotics for a couple of weeks and then another psa test. This time it was 32 so I needed to get a biopsy. As I had my wedding (to my partner of 20 years), the honeymoon and an overseas trip planned during December, we booked the trus biopsy for early January.


 


Although I suspected I had prostate cancer, my assumption was that it would be small and therefore fixable. After all I have no symptoms, and throughout my life I have never suffered illness - just don't seem to get sick. The only reason I discovered I had high blood pressure years ago was because I was a blood donor and the red cross told me to see my  GP.


My wife and I were pretty devastated when my Urologist described the tumour as  quite advanced and aggressive.  Of the 6 biopsies 5 showed cancer. 2 had a gleason 3+4=7, and the other 3 were 3+5=8. All 5 showed perineural invasion but there were no signs of extraprostatic extension. He believed I have had this cancer for some time, perhaps even when I had the last low psa reading 3 years ago.


 


He then sent me for a Ga68 PSMA pet and CT scan to see if and how far it may have spread. Luckily it looks as though lymph nodes and bone are clear but the cancer has spread to seminal vesicles. I'm now booked in to get an open radical prostatectomy on Feb 17.


 


To be continued...


 


 


 


 


 


 


 


 


 

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Paul Edwards

Graham - one thing missing from your story is whether you've had a second opinion and fully considered the alternative treatments and the side effects.

 

Or is it a case of your urologist saying "I can do the operation on 17 February" ?

 

Many men complain after surgery that they didn't properly understand the risks and the side effects.  The surgeon may have told them about the side effects but, in the midst of dealing with a diagnosis of prostate cancer, they were in no position to listen properly.

 

One of our members, Darryl, has posted his horrendous story of the severe after-effects of his surgery.  Another member, Paul, who commented on Darryl's story, didn't have any problems with erectile disfunction but had continence issues and had to have another operation to install a sling.

 

On 9 January 2016 a journalist in the Melbourne Herald-Sun newspaper wrote an article about her father's prostate cancer.  Here's part of that article:

 

"my father had his prostate gland removed to cure his aggressive cancer.

Since Dad’s operation, he has become mildly incontinent and needs to wear pads every day.
 
Sometimes, when he runs out of the $15-per-pack nappies designed for men, he buys or borrows some of my significantly cheaper pads.
 
I’ve watched him cringing with the effort of controlling his bladder every time he stands up and sits down.
 
I’ve seen him withdraw from family and shy away from people in the street, concerned he might reek of urine.
 
I’ve seen him struggle through a depression that’s rendered him bedridden.
 
But perhaps the most tragic thing is that my dad felt so unprepared for these life changes.
 
He was told about the incontinence and the erectile dysfunction that would ensue after treatment, but felt he had no time to prepare emotionally."
 
Some researchers from Sydney University interviewed 21 men from a Prostate Cancer Support Group about the side effects of their treatment.  19 of the men interviewed had a radical prostatectomy.  Six men were within the first 12 months since initial treatment, 13  were less than 3 years, and 2 were less than 5 years since treatment. Their paper "The struggle towards 'the New Normal': a qualitative insight into psychosexual adjustment to prostate cancer"  contains direct quotes from the interviewees about the various side effects and the impact on their lives.  It is well worth a read.
 
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Paul Edwards

Studies show that a physiotherapist-guided pelvic floor muscle training program, commenced before surgery, significantly reduces the duration and severity of urinary incontinence after surgery.  It's much easier to learn how to do pelvic floor exercise before surgery, rather than trying to learn when you're still sore from the operation.

 

My surgeon sent me off to a continence physio for a few visits before surgery. I think it's well worth doing.

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Geoff Buttfield

Graham

I can only agree with Paul,s comments regarding a second opinion BEFORE agreeing to surgery, a path with almost certain severe side effects. Given that your PCa has already 'escaped the capsule', is your surgeon confident of removing it all 'with clear margins' or is he expecting that you will have to go on to other treatments? (Radiation, ADT, etc)

IE. Are the risks of Surgery worth the outcome if a cure is unlikely. Unfortunately, the Dangers of Surgical Overtreatment have been a major topic in recent times.

Regards

Geoff

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Thanks Paul and Geoff.

Whilst it's true that I haven't sought a second opinion, I know 2 people who have had the surgery and although they suffered the common side effects, both are pleased with the decision and both are still in remission. The urologist I am seeing is confident the cancer has only spread to the seminal vesicles at this stage (due to what could be seen on the ga68 scan) and is therefore looking at this as a curative option. Whilst he indicated this was by best chance of a cure, he did say there is still a chance cancer could return if there are microscopic undetectable tumors elsewhere. He is very experienced having been doing this for over 25 years which gives me some comfort. He is also taking into account my age and general health.

My own view (and my wife agrees) is that if it is possible to remove it, that is the option we would prefer to persue rather than trying to shrink and kill it with radio therapy. I hope I don't regret the decision but I haven't made it lightly or without much consideration. Many, many hours and days have been spent reading about the disease and treatments so I not going into it blind, so to speak. Reading the stories on this forum, and other sites of real peoples experiences have been extremely helpful and made me realise just how common this disease is.

Thanks again,

Cheers,

Graham.

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Paul Edwards

Graham, too many people don't do their homework and make a rushed decision. The reason for my comments about your story was to make sure that you didn't fall into this category.

 

I'm glad to hear that you've done your homework and also that you've involved your wife in the decision-making.

 

Having a very experienced surgeon reduces the potential for problems arising from the operation.  I was very interested/impressed that he is using the Ga68 PSMA PET scan in the staging process.

 

Best wishes for the 17th and a speedy recovery.

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Geoff Buttfield

Glad to understand that you've done the research.

Good Luck!

Geoff.

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