About Barrie1943

Barrie1943

I had radical prostatectomy (RP) 2015. PCa now returned to lymph node near tail bone. Is this classed as local or distant travel? I read that stage 4 is generally not curable. That PCa spreading from prostate to node is stage 4. I am told my spread 8 years after RP to node near tail bone is "T3A recurrence in node (3+4 = 7)" and not stage 4, incurable. I will complete my 28th radiation to the upper pelvic area tomorrow and am midway through first 3 months of Zoladex 10.8 mg implant. Next is scheduled for 7th June and planned as the last. They say I will learn in about 6 months how the treatments have fared.Am I stage T3A or generally uncurable stage4?????????????????????????

Barrie1943

Today was day 7 of my 28 days of radiation treatment on the return of PCa 8 years after my radical prostatectomy (RP). My journey began in May 1990 when a 17mm hypo echoic area showed up on a U/S scan. Two months later a further scan reported a focal lucency. A scheduled biopsy was cancelled due to emerging doubts over U/S capacity to recognise cancer. Through to July 2015 my BPH was medically treated with Prazosin with 12 months of Duodart added. A rise in PSA from Duodart's 1.15 March 2014 to 2.62 in June 2015 led to MRI and RP that November. My Urologist had always told me that something other than PCa would kill me and that has kept me secure during all this time. Awaiting today's treatment I struck up a conversation with another patient. He was 80 with 7 more treatments to go on his prostate. He said his aggression grade was the worst form of PCa and he had already been told his current treatment would be unsuccessful and the next round of some other action would also fail. I did not know how this could be possible and tried to improve his outlook with my 8 years post RP and another at least 5 years to any expected doom. The entire staff at our hospital are brilliant as have most of my medical people been along the way. My radiation choice has been hampered by the limited amount of information available due to a shortfall in data collection. Two Urologists came up with “ take no action till PSA went from 0.80 to 10.00” and “radiate the 1 detected spot". Oncology from “radiate the whole field" to “only radiate the pelvic area excluding the bowel, bladder and old prostate areas”. I went for the 4th option hoping PCa doesn't return to the excluded areas. I am convinced much more post-approval data on medicines and procedures, especially Duodart and biopsies, is required. Hopefully the Health Department's Therapeutical Goods Administration (TGA) generally ensures new medicines and treatments are extensively trialed and supervised ahead of release. It then does practically nothing to monitor subsequent outcomes and results. Their Database of Adverse Events Notifications (DAEN) has a lot of data about things like headaches but is scant on some much more serious complaints and outcomes. This leaves the industry with a shortfall of information necessary for proper choice. BPH options range from medical to surgery and cost is a likely reason for the lack of TGA interest on outcomes for these choices. Proper data on MRIs and PSMA Scans performance could see risky biopsies removed from the required procedures list. 5-alpha-reductase inhibitors finasteride and dutasteride are widely prescribed for treatment of BPH. Prostate issues have a high rate of progression to PCa. PBH is frequent in a high percentage of men as they age yet TGA has only 8 cases of PCa on Duodart's (dutasteride) DAEN even though the database is only including cases where the disease just simply follows the use. It does not indicate cause. This scenario is evidence of how little data is collected in just that one case. If that is how the TGA operates it is certain other adverse effects are never discovered. Almost every male my age I converse with tells me they are on Duodart. I would expect from this that at least 100,000 Australian men would be on Duodart. I could not learn the exact number but this must be known at the Department of Health through their PBS records but cannot be obtained. As a high proportion of BPH sufferers progress to PCa the number that were prescribed Duodart must be in the tens of thousands. Somehow the TGA's data of men that progressed after taking Duodart is only 8 and only one since September 2017. Even if you accept the drug does not or rarely causes Cancer this data should be more correct. It beggars belief that statistics to be used in important medical decisions are collected in such a perfunctory manner. When Covid pre release investigation was so scantily performed it is appalling that post-release information is collected in such a way. With the vast improvement of PCa detection procedures the risk of spreading the cancer through biopsies must also be questioned.

Barrie1943

I had a discussion with Oncology 2 team. They are also recommending ADT + RT but excluding the former prostate area and the bladder and bowel areas. This I believe is mainly due to my 8 years of incontinence. This is 24 RT hits instead of Onco1's 33 and all in all I prefer this one but might have different thoughts if the PCa comes back again in the parts we miss. I suppose that could be managed with another series of RT but I hear primary treatments have greater success. This is a real raffle and I suppose it's a 1 in 4 chance and I can't be too upset if I miss. I work my way through a few UK posts and they appear to get concerned at less and earlier PSA rises when PCa comes back years after surgery and go for treatment earlier as well. FOUR CHOICES ALL BOTH GOOD AND BAD I am 81 in Newcastle Australia. I had OpenRP November 2015. No ADT or RT. PSAa OK till Jan 2021 0.02, Apr 2021 0.03 Dec 2021 0.03, June 2022 0.06, Jan 2023 0.13, Apr 2023 0.16, Aug 2023 0.32. PSMA detected PCa in node near tail bone. Urologist 1 recemmends ADT + SRT of node, Oncologist 1 wants ADT + SRT "the whole field". He feels there may be single PCa cells elsewhere waiting to be detectable. Urologist 2 (UK) thinks at 81 surveillance till PSA = 10. Oncologist 2 wants ADT + SRT but excluding former prostate area, bowel and bladder areas. I have been incontinent for past 8 years which my lead to the final recommendation. PSA went to 0.8 on 29 Jan 2024. 2015 Surgery pathology: Core biopsy Gleason score: 3 + 4 = 7 Prostate Measurement: 51x43x41mm Prostate Weight: 63.5 grams (with both seminal vesicles and vasa deferentia attached) Tumor Type: Acinar Tumor Extent: Unifocal Tumor Location: Quadrants: Left posterior Zones: Peripheral Tumor Volume: 0.09cm3 (3D volume estimate method Gleason Score: Primary grade 3 Secondary grade 4 Composit Gleason Score (ISUP2005) : 3+4 =7 Index carcinoma score (ISUP2005) : 3+4 =7 % High Grade (4/5) 45% DIAGNOSIS: PROSTATE - ADENOCARCINOMA Does anyone have any thoughts. My Dad died in hospital in 1981 having RT for bladder cancer of just 2 months. My PSAs began to rise 6 years after my 2015 Open RP. My GP referred me to Uro1 at 0.03. He said come back at 0.20. At 0.16 > 0.32 he sent me for PSMA and now 4 options. I have a week to my final choice????????

Barrie1943

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

Barrie1943

18 January oncology visit has left me in an impossible situation. OK both surgeon and oncology recommend HT but the radiation is my choice from the surgeon's PCMA identified PCa or the whole area. The Oncologist says if you had a weed in a field you would not just pull it but treat the whole field. The problem is they tell me the treatment doesn't just kill the cancer cells but other cells as well. There is a lot of important body functions in the whole field. If the procedure cannot restrict its destruction to just the PCa it seems a risky way to go. If the weed was in a field together with your crop Round Up spraying may be overkill. Is there some information on how the radiation actually kills what?

Barrie1943

Barrie age 80 and concerned at volume and effects of expected PCa radiation and hormone treatment. I belatedly had concern at the medicated treatment of my BPH. Also after the fact I had issues about the spreading prospect from the biopsy of my two MRI detected cancers to extract cores for further evaluation. Eight years post Radical Prostatectomy PSA again becomes an issue and there is a choice required about this treatment too. I had spent much of my post 1988 life going to, waiting for, recovering from and trying to evaluate urology. I sometimes wonder if I would be worse off if it had all been avoided. Radical Prostatectomy including lymph glands 5 November 2015 eventually sees ongoing 2 pads a day incontinence. The surgery was 100% but the treatment from the expensive Private Hospital was problematically very sub standard. The end of 2015 and a lot of 2016 were horrific. The worse were the severe untreatable fungal infection and a complete blockage. These were both poorly and incompetently treated by emergency department staff. Triage even recorded my earlier treatment as a TURP as she had seen this terminology used before and was easier to write than Open Radical Prostatectomy. Two additional theatre visits followed these with stents, months of self catheterising and impossible endeavours to improve urination. The memory of us trying to get and keep Uridoms on post RP is comical now but should not be wished on anyone. Pre-op I was told I may have a few months of incontinence now it's that radiation may make that all worse. PSAs 0.01 to June 2020 then 0.02 from January 2021 and 0.03, 0.06, 0.13, 0.16 and 0.32 to August 2023. November 2nd - Ga68 PSMA PET/CT Scan revealed secondary PCa in an area close to the spine likely in a LYMPH NODE. The original surgeon was pleased it was not in the prostate area indicating he had removed sufficient localised reinfection points. This also mostly removed my suspicion that the 2 positive spot biopsy actions had caused a spread through the blood. He felt the 8 years since the removal and current PSAs indicates the damage to date, this time, may not have significantly affected my lifespan. He will arrange for a radiologist to contact me in January and the 3 of us determine action going forward. The surgeon feels zapping the node alone may be the way forward coupled with hormone treatment. He said the radiologist may want to also radiate the prostate area which would likely further interfere with the bladder/urination function. Appointment with surgeon 8:45AM 24 June 2024 with order for PSA 10 June 2024. My highest ever PSA was 3.8. The cancer was thought to be maintained within the prostate and surrounding nodes were clear. They talk about the margins. What's the prospect of it getting up there 8 years on? Does anyone have any like experience to assist with my input into the zapping decisions going forward? Health professionals seem to look on the bright side and "side effects'' are often downplayed. I somehow gleaned from my latest urology visit that radiation was a one off hit. My first look at a case on this site quoted 20 PCa radiation hits followed by severe side effects. Then I recall my father's death at age 67 from the effects of cancer radiations. I expect though my last 8 years have seemed pretty horrific to me and others I talk to in similar situations have fared better I have likely still been luckier than a lot. Even so this has brought all that back and I am now so depressed and wary of what may come. I lost a lot more than a prostate in 2015 and it was considered dangerous to bring my testosterone level to normal. I don't know if I really have options and fear I will walk into this blindly again. Barrie

STAGE 4 OR NOT

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Re: RETURN OF PCa POST RADICAL PROSTATECTOMY

Re: RETURN OF PCa POST RADICAL PROSTATECTOMY

Re: RETURN OF PCa POST RADICAL PROSTATECTOMY

RETURN OF PCa POST RADICAL PROSTATECTOMY

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