Surgery vs radiotherapy

Yes I think I remember seeing this before about your OH.

I don't know or can't remember his full PC history but does go to show that can take off at any time although perhaps a bit rarer to accelerate like that, sorry to hear by the way.

Best wishes

Steve 

He had ASAP and PIN (not even on the Gleason scale) after biopsies in 2010 and 2011 but was put on AS because of family history (another factor to consider). He is a low secreter so no warning there then WHAM in July 2020 T4. 3 recurrences so far since then but still going strong with main issue being fatigue. SBRT last month and now doing well so looking forward to a summer off without treatment apart from 3 monthly Prostap injections provided the MRI's show that the mets are going down and no new ones crop up.

Did he have a MRI between the start of AS and 2020 because that would surely   have shown the growth, I presume not because the PSA hardly moving

Steve

Yes, annual MRI's and DRE, plus 3, then 6 monthly PSA. In all this time he was seeing a urologist because of occasional UTI'S, also a warning sign as is prostatitis. His prostate was normal volume so no BHP..

Must be very unusual if not showing on MRI, was there no tumour to show in the gland or just small.

I am presuming it suddenly appeared elsewhere in the body.?

Sorry to ask so many questions, it may help others though at some point.

Steve 

Hi Fleet

I appreciate your dilemma and cri de coeur, as I am sure the others on this site do too.  We have all been where you are and have had to work through the mass of information and data.  We all want to optimise our survival chances and our health going forward.

I don't see all your specifics so it is difficult, but I am also not a medic and would not want to steer you in a specific direction, which would incidentally also be the case of any medic not directly involved in your care.  The best advice I would want to give is to factor in your specifics and do your personal research, then identify and try and obtain what you consider to be the best treatment for you and by the best clinic/person.  I know that this isn't always achievable within the NHS, and personal resources.  We just have to do the best we can.

I also appreciate your particular dilemma with AS vs treatment.  With a 3+4 diagnosis I contemplated AS, but subsequently opted for RT/noHT because it was dependent on my specifics.  If I had been 3+3 then my decision may have been for AS, but there are so many individual variables to take into account.  Despite having PCa, we are all unique in so many ways.

I am sure that there are others on this site who had a 3+3 diagnosis and can provide further experiencial etc advice.

I respect Dr Mark Scholz assisted by his wife, and their very helpful videos.  They certainly helped me in arriving at my treatment decision.  I assume that you are in the UK, If so, I would caution accepting all their advice verbatim, because we don't have ready and routine access to PSMA/PET scans etc going forward, as Americans do.  I feel that their monitoring systems are superior.

With a 3+3 diagnosis you are in a better position than many, and 'should' have the time to evaluate your options thoroughly, without feeling under pressure to arrive at your decision.

I am sure others will be along to assist.

Good luck going forward.

Dedalus.

Fleet said:

Another thing Dr Schotz said was Gleason 6 won’t spread and the terminology is wrong calling it cancer 

Whilst I am fully aware of Dr Scholtz and his videos - and we do have Community members worldwide - we are all individuals drawn together by the same bond "Prostate Cancer".

Gleason 6 is described in the UK as cancer and I know full well how a diagnosis can change - I started off as a Gleason 7 - I am now a Gleason 9!!.

There is amazing advice on the Community - and that's what we are here for - but at the end of the day there is no wrong and right treatment for any of us.

I strongly believe in listening to and reading the journey of fellow Community members (thanks to you all who keep updating your journey) and taking advice from trusted sources, Macmillan, and Prostate Cancer UK (not Dr Google).

As an individual - I work out what is best for me - (our personal circumstances and preferences are all different) and discuss them with my oncology team - and to me that's the way forward.

Debate is great - but please everyone - remember we are all different!!

Thanks for reading.

Have a great weekend - Brian.

Like a lot of people on this forum, I watched the Dr Schulz video and drew some reassurance even though my husband is intermediate to high risk. So, like Daedalus , I would advise as much if your own research as possible. My concerns with the video are ( if I recall its contents correctly):

1. It is based very much on the USA model of care - so commercial factors are more important than here in the UK

2. no sound, peer reviewed evidence is presented based on longitudinal studies ( we do, though, have the Prospect study data to call on)

3. There are no comments from a surgical consultant to consider

4. Are Dr Schultz comments completely objective? Are we sure of his qualifications? ( I have not researched his professional status but recall the discredited Dr and his statements about the MMR vaccine and would advise researching his qualifications and track record!)

5. The psychological impact on men of tir choice of pathway must be considered. Over the last 2 years or so I have read posts here from men who ‘just want it out’. How do they feel about now thinking they may have undergone unnecessary surgery? How do these men who ‘want it out’ feel about potentially not having the surgical option?

6 there is no consideration in the video of impacts on spouses or partners. This is a couples disease. Although ultimately men have the decision to make about their own bodies, I can’t help but feel that whatever pathway is decided upon - it is better if both partners have achieved agreement - both now and in the long term if there is recurrence.

7. In conclusion, my advice is to proceed with due caution, take all advice and research together and proceed with the treatment that feels the best option for you.

No tumour in the gland, just unusual looking cells at the initial biopsies which COULD be precancerous but we were told hubby would die of old age before prostate cancer.

We will never forget the urologists reaction in 2020. He came into his office after examining hubby, put his head in his hands and said 'I don't believe it' - definitely a Victor Meldrew moment. He then sat there and said there was a prostate mass along with another suspicious area behind the pancreas which had shown up on the ultrasound - he carries this out at each visit. A bone scan was booked for the next day as he wanted this done before starting on Bicalutamide which hubby took as soon as the bone scan had been done. The next week hubby had biopsy under anaesthetic and an MRI to pelvic area and a whole body CT scan. The following week we saw the medical oncologist who started Prostap 3, and the week after we saw the radio oncologist. 33 sessions EBRT started in week 4. Biopsy showed a rare aggressive cancer and lesion behind pancreas thought to be associated with scarring from a Brucellosis infection which wasn't properly treated in the 1970's - hubby used to help out on friends farm and put his arm up the backside of an infected cow. Most of the pelvic mass was outside of prostate and tracking up nerves towards the kidneys and compressing the ureters so he had to have a pigtail catheter inserted but they could only get 1 in so he ended up with a damaged kidney so now has Chronic Kidney Disease. Pelvic EBRT was successful but distant mass was problematic because of its position. Hubby was kept on Prostap and Bicalutamide for 18 months until distant lymph nodes needed controlling, after which he was put on Enzalutamide. 18 months later the same thing happened so Enzalutamide stopped and he had 6 cycles of Docetaxel. This dealt with some of the mets but not all and another recurrence so he was then offered 5 sessions of SBRT last month after a PSMA PET CT showed that the adrenal glands needed zapping as well as the distant mets. We are just grateful that we have a very proactive medical team who insist that they still have more tools in the toolbox. Genetic testing is currently being carried out for further down the line and we have also discussed Lutetium 177, immunotherapy, PARP inhibitors, Cabazitaxel ..... As hubby does not have bone mets then Radium 223 is not an option. For anyone who thinks scans etc. have been done very quickly I have to qualify it by saying that we do not live in the UK so things are done differently here. Could we have prevented the T4 spread - I don't think so because of the type of cancer. Going from being told you are going to die of old age to a possible 6 months left was a shock because the experts didn't know how the cancer was going to react to treatment. Fortunately it responds for some time but we have the sword of Damacles hanging over us so make the most of every day. Life is so precious.

Hi Steve Thankyou for your experience as everybody knows it’s a hard choice to make. 
I think I will opt for surgery.