Thanks for the interest Susana!!
I am 80 with limited modern technology expertise. When I go to the Cancer Council site "Barrie1943" is on top of "Forum" page but I cannot find how to get to my input. I only have one and wasn't sure which "I have cancer", "side effects" etc I posted in. I went along with GP and Urology from 1988. They were the experts. Post Radical Prostatectomy (RP) I had some concerns and went on a UK site "Patient" and read and contributed quite a lot. As the post RP years grew I opted out. Then the PCa raised its head again after 8 years, almost got to the 10 they said was the margin" I couldn't get back to Patient. Could change password but they wouldn't let me past the "memorable word" and that could have been anything. I found another UK site that was specific to PCa and got a bit of help there. Cancer Council forum is OK but a bit broad and not much patient help when I fluke access to my post. During the oncology visit I obtained Cancer Council booklets which are helpful but outcomes from other sufferers are what is needed. We are required to make decisions that we are not capable of and we have no figures or numbers to go on. There are a list of side effects that "you may not have", "that you may have during treatment" or "you may have forever". No figures or numbers. Patients also know the side effects of unlucky or erroneous treatment outcomes that are not on anyone's list.
Post RP I found some information on the possibility of Dutasteride causing cancer. The TGA had a small number of this adversity in their database but the threat was not proven. The supplier was no help and no one was taking the figures. I subsequently discovered that TGA had my case in their figures twice. Once through me and the other through the drug companies reporting on mine. This showed the system was pretty much a waste of time but that the pre-authorisation testing was still in doubt and still the only test or research. I got the 5a inhibitor after asking if I could have an increased Alpha blocker above 4mg and was told that had not been researched. I was given a 5a with its own Alpha blocker in addition to my existing treatment. This took the blocker to 8mg and the Dutasteride did nothing but maybe help the PCa to develop.
I soon became even concerned about the 2015 biopsy. In 1990 a biopsy was cancelled with doubt over ultrasound's (U/S) ability to detect cancer. A 6 shot biopsy when the US was doing 48 in 2009 found nothing. In 2015 the government was still putting its faith in U/S as my MRI was not supported. It detected PCa spots that were hit with the needle. When I investigated biopsies I was told they could not spread the cancer as the survival rate from pancreatic cancer was the same for those that had and had not. I found this pretty flimsy. Now I am told the needle holes are sealed so PCa cannot escape. OK but I bled afterwards in urine, waste and seamen. Hard to accept.
I had some bad experiences post RP with erroneous excess fluid input, mysterious rash and severe untreatable fungal infection (FU). Urology would not allow recatheterisation, uridoms were useless and this went on and on. A subsequent urine blockage was mistreated when emergency triage couldn't spell prostatectomy and abbreviated my condition to TURP. Urology was not called and countless attempts to get a full size catheter past "the prostate" did who knows what damage to the wound. This resulted in a cystoscopy and countless catheterisations and painful stents. The Hospital for some time refused to amend their erroneous records and had to be forced to do so.
The 8 years of incontinence has now got me to rising PSA and PSMA Pet Scan's "Intense left presacral node is "suspicious” for recurrence of malignancy". It seems I have 4 choices
1. Just monitor PSA till reaches say 10.00
2. Monitor + ADT
3. ADT + Radiation Therapy(RT) node 33 hits
4. RT (33 hits) the whole pelvic area.
The problem with 1 is why did we PSMA at 0.32 if it was OK to go to 10.00 and can the cancer get to bones (that cannot be radiated) before 10.00.
I already have most of the ADT and RT side effects as these are pretty much side effects of aging so what does treatment do to that? I did so little research and had so little concern ahead of RP. It just seemed the way to go and the effects were so downplayed. Then I consider the last 8 years could have been so much better. I didn't even see oncology back then. I was younger and fitter and RT to prostate ahead of any biopsy could have been so much better. These decisions cannot be made by ordinary people without details and figured we do not have. I read in your booklet of some new RT with 5 or less hits has been researched and is available in some places. This has not even been mentioned at urology or oncology. How is this possible as it's a plus for delay.
I keep going back to my dad. He had two thirds of his stomach surgically removed with ulcers ahead of the antibiotic option. He died in 1981 at 67 from side effects of RT without that treatment's mention on his certificate. Our whole medical treatments choices and cost needs to have a good look at but no one wants to do that. I made a call to your help line and was transferred to Prostate Cancer Foundation. They recommended Oncologist as the best to take notice of but of course it's all up to me and I change every minute. Need a 4 sided coin.
BarrieH
