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The Hardest Decision

User
Posted 19 Sep 2018 at 08:39

Hi,

57 year old from Sydney Australia.

After reading a number of posts it would appear that the tyranny of distance doesn't affect Prostate Cancer as we have similar issues.

Diagnosed as potentially having Prostate Cancer from a PSA reading in Dec 2017 and its been a bloody rollercoaster let me tell you.
Being just before Christmas couldn't get in to see the Urologist till February (WTF).


GP booked me in for another PSA test in January and my PSA had risen from 2.6 in May 18 to 4.9 in December 2017 (When it was 1st raised with me) to 5.0 In January. In January they did Free Psa which was 0.6 (12%)

March 2018
See Urologist and he arranges another blood test and MRI (Also takes a few hundred dollars not covered by medicare)

April 2018
PSA now 6.7 Free Psa 0.7 (10%)
MRI 15mm Ovoid Right mid gland PZ Nodule PI-RADS 5
Urologist arranges Cytoscopy, Transrectal; Ultrasound and Biopsy.

May 2018
Everyone too busy lets skip May

June 2018
Biopsy
Right Lateral Mid Grade Group 3 (Gleason 3 + 4 = 7) percentage High Grade 80%
Left Mid Zone Grade Group 4 (Gleason 4 + 4 = 8) percentage high grade 100%
Number of Cores 8/25
Moderate Prostatic Enlargement
Mild Trabeculation of Bladder
Volume: 39.6cc
PSAD 0.13
Urologist discusses finding with me. Wants me to get a CT and Bone scan and will arrange for me to talk to an Oncologist and Robotic Surgeon.

July 2018
Bone Scan done No scan evidence of skelatal Metastasis
CT Scan Right Seminal Vestical Bulky and may be involved nothing else significant.
Met with Oncologist and Surgeon.

This when the proverbial you know what hit the fan.
After my consult with both I decided tio go with the high dose Braccy.
I then proceeded to try and get prices to see what my out of pockets would be.
Basically they would not give me even an estimation without me first booking the procedure and Hospital.
Now I could have just said ok then cancelled but I didnt. I agreed that the costs may vary slightly depependant on the ancillary staff but give me an estimated cost on out of pockets.

It is now the 19th September 2018 and I have not even had a phone call.

Well I had lost all confidence in this urologist and his cronies so I went to my GP and got a referral to get a second opinion.
As I work as a contractor in a couple of hospitals I asked around for the Doctor with the best reputation. There was a consensus so this is the guy I went to see.

Chalk and cheese, this guy rushed things through, rang and made appointments for me and generally made my health seem important.
He explained a lot of things to me and in a small way even contradicted what the previous surgeon had told me then showed me on the scans exactly what he meant.

Problem was it was poor timing as he was about to head oversea's for 6 weeks lecturing and a holiday.

Still he arranged for me to have a PET scan and made sure I had all the costings for surgery and Braccy and has advised he will call me in a couple of weeks to go through it all again in case I have any questions. He also has pencilled me in for Surgery in October if thats what I decide.

The Pet scan also backs up what he was saying about the surgery and trying to save some of the nerves or at least do as little damage as possible. The only down side was a mildly avid left Obturator Lymph Node being noted.

So that's my Prostate story to date BUT

My big issue is deciding what to do.

I am only 57 and since finding out I may have Cancer I have changed my diet and habits drastically. I have dropped my weight from 130Kg to 87 Kg and feel so much better for it.

Married for over 30 years my kids have moved out and my sex life is better than ever (well almost).
No kids around to hear the wife scream or me Beg. lol
We go out more often and already had plans for a big holiday next year as I have long service leave.

After reading so many varying stories on here I am not sure I want to roll the dice on Erectile and Incontinence issues.
Sex is and always has been a cornerstone of my relationship. Its something we both enjoy and as the wife is a few years younger than me iits something I am also unwilling to potentially take away from her as well. 

I don't want to be Mr Grumpy, no one seems to understand that although I want to be around for my family, I WANT TO BE AROUND, not some watered down grumpy version of myself. If I was signing a contract where I could have 15 years as life is now or 30 years with the side affects that can be part of this treatment I would without question and without hesitation sign up for the 15 years.

That's the catch 22 in this situation, no one can say what will happen.

To those that have had treatment or decided not too I dip my lid to you as I have never had a harder decision to make. I make no judgements on anyone as we are, thankfully, all different and have different desires and needs.

My Gut tells me: Go the raw food, cut out stress and ride it out way
My Head Tells Me: Try a less intrusive integrated approach with Diet, Exercise/Yoga, IV Therapy, Hyperbaric Oxygen, Hyperthermia, Acupuncture.
The above with regular blood tests and other scans to keep a bit of a check on things.
My Heart Tells Me: Radical Prostate Surgery, Braccy Therapy then anything else I can do to hold on as that's what those I love most want me to do.

Its a dilemma but one I have to face within the next month or so.

 

 

User
Posted 19 Sep 2018 at 12:45

Hi Mate,

Sounds like you've been through the mill.   If your sex life is very important and at 57 then I can't advise which is the lowest risk to preserve your functions.  My most immediate thought was the plan to ride it out with a healthy lifestyle should be forgotten while you focus on the best treatment plan. 

There are some novel treatments like Retzius Sparing that people say have a higher chance of preserving functions and there may be others, I don't know much about Brachytherapy.  It can also depend on skills. 

Congratulations on losing 43Kg that's a huge achievement.   Hopefully someone else will add some good advice. 

Regards Peter

User
Posted 19 Sep 2018 at 15:07
Hello , click my picture and read my profile. I like you was utterly distraught at the thought of ED being relatively young at the time , 48 , and enjoying a very active sex life. I almost said no to surgery but did it for my little lad who was only 5 at the time. Sadly surgery didn’t work for me and although well outwardly , I have it growing somewhere but have refused further treatment till they find it. It took me roughly 2 yrs to get proper normal erections , and even then only with Cialis and a cock ring. Before that we had a pump and injections. Saying all that if you are creative in the bedroom anyway , then you can still have an amazing time without an erection and can easily reach orgasm completely flaccid which not all people know. And you know all about sex stores and toys etc ........

You can get through this whatever you decide. It’s the people who can’t talk to each other that get into huge difficulties.

If life gives you lemons , then make lemonade

User
Posted 19 Sep 2018 at 16:58
Surprised you had a bad experience of tardiness and almost indifference earlier but from what you tell us it would seem that if you are to have treatment it would be better to have it sooner rather than later. There are risks in having treatment as you are aware but also risks in not having it when it is advisable to do so. PCa death can be an awful way to go and if you can stave it off by having treatment soon and in need more treatment in due course so there is more chance of dying of something else. may be preferable. Another thing to factor in when making a decision
Barry
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User
Posted 19 Sep 2018 at 12:45

Hi Mate,

Sounds like you've been through the mill.   If your sex life is very important and at 57 then I can't advise which is the lowest risk to preserve your functions.  My most immediate thought was the plan to ride it out with a healthy lifestyle should be forgotten while you focus on the best treatment plan. 

There are some novel treatments like Retzius Sparing that people say have a higher chance of preserving functions and there may be others, I don't know much about Brachytherapy.  It can also depend on skills. 

Congratulations on losing 43Kg that's a huge achievement.   Hopefully someone else will add some good advice. 

Regards Peter

User
Posted 19 Sep 2018 at 15:07
Hello , click my picture and read my profile. I like you was utterly distraught at the thought of ED being relatively young at the time , 48 , and enjoying a very active sex life. I almost said no to surgery but did it for my little lad who was only 5 at the time. Sadly surgery didn’t work for me and although well outwardly , I have it growing somewhere but have refused further treatment till they find it. It took me roughly 2 yrs to get proper normal erections , and even then only with Cialis and a cock ring. Before that we had a pump and injections. Saying all that if you are creative in the bedroom anyway , then you can still have an amazing time without an erection and can easily reach orgasm completely flaccid which not all people know. And you know all about sex stores and toys etc ........

You can get through this whatever you decide. It’s the people who can’t talk to each other that get into huge difficulties.

If life gives you lemons , then make lemonade

User
Posted 19 Sep 2018 at 16:58
Surprised you had a bad experience of tardiness and almost indifference earlier but from what you tell us it would seem that if you are to have treatment it would be better to have it sooner rather than later. There are risks in having treatment as you are aware but also risks in not having it when it is advisable to do so. PCa death can be an awful way to go and if you can stave it off by having treatment soon and in need more treatment in due course so there is more chance of dying of something else. may be preferable. Another thing to factor in when making a decision
Barry
User
Posted 19 Sep 2018 at 17:04
With PIRADS 3on one side and PIRADs 4 on the other, you are not the ideal candidate for a few lifestyle changes and some acupuncture - you could try it but your bargain with the devil would probably be for a lot less than 15 years. My father-in-law refused any treatment that would affect his sex life and he lived for 4 years.

Have a look at the YANANow website- set up by a member here many years ago but Australia-based and searchable by staging, treatment option, etc. You will find other men in your area or country to compare notes with

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Sep 2018 at 17:16
Just a correction, Lyn. YANA these days is run by Mark Freedman in the US with occasional help (when he needs it) from a few old stagers like me. It used to be a genuinely international forum but seems to consist in recent years of almost exclusively US contributors. It is much less helpful in terms of current concerns for UK citizens than this forum, but it does have a helluva database which is very searchable.

AC

User
Posted 20 Sep 2018 at 19:30
I didn’t say he was still alive, but he was much loved by some of us and I have always found the website to be very much more searchable than this one.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Sep 2018 at 03:18

Well booked in to see an Integrated Medicine Doctor next week.

They have a wholistic approach to medicine and combine a number of therapy routes in to one.
I am interested in hearing what they say and will be armed with all the test results and DVD's from all the poking and prodding I have had lately.
Specially Interested In:
Hyperbaric Oxygen Therapy
Hyperthermia Therapy
IV Therapy
Naturopathy
Nutrition
Meditation/Yoga

Also booking into another Cancer Centre for a second opinion and costing as the out of pockets I am facing for surgery at the moment are I believe exorbitant at over $20,000.00 for the surgery and hospital then extra for EBR Treatment, Hormones and follow ups. All not covered by Medicare or my Private Health Fund. I think there is something smelling a bit rotten in cancer care.

Anyway thanks all and I will try and come back regularly with any updates on treatments I try and test results.

I am still hoping not to have surgery but getting a bit of pressure from Doctors and Family to go for it.

Having lost my 30+ Kilo I feel better than I have for years, I am more active, my sex life has improved dramatically, I fatigue much slower when out riding motorcycles with 700 + Klm days not an issue and with People telling me how healthy I look its hard to adjust to the fact that I have a problem at all.

Regards

78Gold 

User
Posted 21 Sep 2018 at 06:40
Hi Goldie,

I would think your best bet would be surgical removal rather than ‘integrated medicine’, but you would have to take a chance as regards sexual function afterwards. Expect some shrinkage of your penis too. A post-operative biopsy would then provide more information regarding the exact spread of the tumour, which brachytherapy would not. And they might decide you don’t need radiotherapy unless you have recurrence.

We in Britain will be surprised that you have to pay in Oz, as I think most of us thought you had a ‘free’ health system like our NHS.

It’s a stark choice, but I wish you the best of luck whatever you choose.

Cheers, John.

 
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