I was diagnosed this week. Still in shock a bit as I am a fit and very active 58 with no real symptoms. I have a psa of 7.7. Gleason Score 3+4 = 7 one in 10 cores with a 2.5mm tumour length whoich is 20% of the core involved. 30% of cores showed cribreform pattern 4 glands. Area of concern on MRIs consistent on both MRIs and is where the positive biopsy was taken. Prostate felt benign during digital exam. Clinical Stage 1, Histological grade group 2. Cancer contained within prostate.
I am seeing my oncologist later this week and have to date only spoken with the consultant surgeon. He was brusque and unpleasant. He dismissed all therapies other than surgery and radiotherapy. When I said that I was concerned with side-effects he asked if I were to prefer to be able to get an erection or to be dead. Not a very nice consultation and left me feeling low.
Having now had a couple of days to research there appear to be a variety of treatments which have had very positive outcomes for some. In fact I have a good friend who has had a successful HIFU treatment and another friend who has had great success with proton beam therapy some years ago. I am arranging consultations with a number of institutions to find out what is available and if I qualify but having read a number of threads on this site I would also be very keen to hear others' experiences and advice if available.
Many thanks,
Written by
welshsky
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PSMA PET/CT will cast light to things that usually are left to be "discovered" (surprise-surprise) after primary treatment has failed. NHS, most probably, will not approve, so if you "invest" in this imaging it will be out of pocket.
No comparison, far-far better in terms of sensitivity, specificity and body coverage. The MRIs you had scan about a 30 cm chunk of your body. PSMA PET does it all the way from head to mid-thigh. There is only one type of MRI that has comparable -some claim better- sensitivity, but you would have the cross the channel to The Nederlands, plus it is much more expensive.
Thanks for the message. There does seem good reason in the articles you refer to to doubt the efficacy of HIFU although they do claim better results now than the did a few years ago. Looks like it might buy a little time rather than cure the disease.
"although they do claim better results now than they did a few years ago." No, the newer results are as bad or worse --where did you see better results recently? The article is up to date:
"Cancer was found in the ablation zone in 36% of the patients who had biopsies for cause in this study. In a hemi-ablation study, 28% had biochemical recurrence and 3/8 biopsied patients (38%) had cancer in the treated lobe. In another hemiablation study, 16% had cancer in the ablated lobe. In a large study of whole gland HIFU, 29% were given a repeat treatment. Cancer was found in 42% of high-risk men in the ablation zone in this study - 10% were given a repeat treatment. In a US hemiablation study, 17% had Grade Group 2 or greater cancer in the treated lobe.
(Update 3/2020) Klotz et al. reported the 1-year outcomes of an MRI-guided and MRI-thermometry HIFU-ablated kind of thermal ablation called TULSA-PRO. The favorable risk men were all biopsied a year after whole gland treatment. Cancer was found in 35% of the treated men even though they barely had a prostate left (3 ccs.) and their PSA was very low (0.5 ng/ml). Full article here.
(Update June 2022) Ehdaie et al. reported on 2-year biopsies of 101 intermediate risk men treated with MRI-based HIFU. 20% still had cancer in the ablation zone, 12% GS≥3+4. 60% still had cancer in the prostate, 40% GS≥3+4.
(Update 6/21/20) Lumiani et al. reported the 16-month outcomes of 52 consecutive TULSA-PRO patients, mostly focal. 27% were positive for recurrence on follow-up MRI, and the recurrence was confirmed by biopsy in all those who had a biopsy. Recurrence rates were similar for focal and whole-gland.
(Update 3/16/23) Duwe et al. reported the 2-year outcomes of 29 favorable risk men treated with focal (38%) or hemi-ablation (62%) at a single center in Mainz, Germany. After 2 years, 38% had biopsy-proven recurrence, a third of those with cancer in the ablation zone, and one with numerous pelvic lymph node metastases. The trial was stopped early because of the high failure rate.
I will dig out what I’ve read before and thoroughly read the reports you’ve sent. Thanks very much. It is surprising to me that the HIFU centres appear to be stating misleading statistics .
Yes! I am also dismayed by their "used car salesman" approach. I have talked to a few and suggested a randomized clinical trial comparing HIFU to SBRT to Ahmed/Emberton in the UK, who ghosted me.
I also suggested they biopsy all of the HIFU patients who suffer regrowth to learn the biochemical mechanism with which the cancer evades destruction. My hypothesis is that heat elicits a protective Heat Shock Protein, but it is just my hypothesis and it needs to be clinically determined.
I had thought that HIFU was a good option but the reports you sent links to are very sobering. I'm confused that there is so little on the web about the recurrence rates and that the stats put forward on sites such as the Focal site appear to be so much better the studies you've referred to.
I saw my NHS oncologist today. He said as I have cribriform pattern in 30% of my core samples (although only one core was cancer positive), the likelihood is that my cancer is potentially quite aggressive. He said I should therefore probably choose a treatment sooner rather than later.
I have recently been in touch with a very early receiver of proton beam therapy who, six years on has no signs of recurrence and no side effects. I mentioned the possibility of paying for PBT privately to my oncologist who said that he could offer me SBRT with a gel spacer and that this would be just as effective as PBT and the side-effects would be no worse. I am not sure exactly what type of SBRT he is offering on the NHS but I would be hugely grateful if you could let me know what you think and perhaps what the questions might be to ask him. While I would rather not pay £££s for the PBT if it were to offer a significant decrease in potential potency side effects I would do. I'd be very grateful for your thoughts.
My consultation was the same as yours. Very brusque and just the two options. I was only diagnosed last week and I'm trying to get my head around it all. Sorry I can't help with suggestions. Good luck.
Reading about others’ experiences of treatment is a good place to start I think. I’m also looking at lifestyle, diet and holistic approaches to rebalance my and build my immune system which may help. Hopefully I’ll learn some things I can share in the coming months.
My husband had a similar presentation at diagnosis. He also saw the surgeon first who tried to "sell" prostatectomy on the basis that it would be "done & dusted in one go". I asked, if that was the case. why so many then have to have follow up radiotherapy & he replied, "Ah, you're on the ball! We don't always get all of it with surgery".My husband spent time seeing all the the specialists & asking them about the details of the various options he was given: which were radical prostectectomy, SBRT, LD Brachytherapy & active surveillance (which would have delayed treatment by only 12-18 months).
He decided on LD Brachytherapy & had 75 seeds implanted in Jan 2023.
He has had virtually no side effects: initially a couple of leaks (not incontinence), a period of intermittent urgency that diminished over time (& he now only gets very occasionally) and some slowness in the mornings/ after sitting for a period in the evenings. He has no ED. His PSA was down to 1.2 at last review in November (which is within the normal range) & he has his next review in a fortnight. If his PSA is still stable he has been told he will be discharged back to his GP.
He took his time in coming to a decision after considering all the options. He recognised there was some "competition" between the different specialities of urology & oncology & made his own decision. He says he is very satisfied with his decision & was grateful he had choice as the cancer was contained within the prostate. He knows that, if there were to be another cancer diagnosed in the future (only a 2% chance he was informed) that top up brachytherapy might be possible, or failing that, prostatectomy would be more complicated but not impossible & that he'd need to go to one of the two surgeons in London to have that done. At 73 he was informed that he was young & should consider long term side effects in his decision making. He feels he made the right choice.
very sorry to hear. Your diagnosis was similar to mine in 2019 ago except my Gleason was 9. It was a lot to take in and I drank a lot of whisky for a couple of weeks. 5 years later I am doing well although energy levels and fitness have dropped a bit and I am getting ready to step back from work. I am still active but my running is much slower than it was and I have to take my time up hills. I take naps sometimes but not excessively., I have learned to prioritise and pace myself. Try to get a ct pet scan to determine exactly how far your cancer has spread. If it’s only in the prostate they can often get rid of it completely - keyhole surgery carries less risk of collateral damage to bladder functions etc. mine had already spread to some lymph nodes around the body but fortunately not my bones so I live with it. I went for maximum chemo and radiotherapy and continue indefinitely on Prostap hormone treatment- this affects different people differently, in my case I have put on some fat and had to slow down my life a bit. Very little interest in or capacity for sex now, bothers me less than I thought it might as I am now also divorced. PSA has been off the bottom of the scale for a couple of years now. It may come back up at some point in the future but new treatments are increasingly available. Hope this information helps a little.
I had a very similar diagnosis in 2020. PSA 6.3; 3 tumors (7(3+4) 20%, 6(3+3) 5%, one unknown missed by TRUS). Treated whole gland with HDRBrachytherapy as a mono-therapy 10/2020, 2 sessions a week apart, 15 catheters, 13.5gy each treatement. Coming up on the 4 year mark and am fully functioning, no incontinence ever, minor side effects all gone within 3 months, and urgency cleared up in ~1 year. As far as treatments go I'd do this one again if needed. Best of luck. If you choose to seek treatment find a doctor that has done a lot of the procedure you're looking at and shoot for a teaching hospital or Center of Excellence.
Bad doc. You're doing the right thing in checking out options. And given the report I think -- I'm not expert here -- that you have the time. Not all the time in the world, time, but time. Good luck.
you’ll get the best advice on this site, I’d recommend reading Mark Scholz’ book The Key To Prostate Cancer, it helped me to get current with it& the treatment options and to regain my perspective on it. Not sure what the choices are in your part of Britain but search this site & Inspire.com for all the treatments people have had.
Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
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