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Nearly 7 years after diagnosis - it's decision time.

Outsiders profile image
14 Replies

Happy holidays gang. I was hoping to put things off a bit longer but, rather reluctantly, think it's time I seriously considered treatment for my PC. I live in the UK and was diagnosed with G6 disease (3 positive cores in sample of 12 following TRUS...confirmed with follow up transperineal) in early 2016, aged 49. Surgery was suggested to me due to age but I opted for active surveillance. In 2019 the G6 was upgraded to a G3+4 (3 cores...all on right side)- despite this I continued with AS.

My PSA, at diagnosis was around 3.2 and for around the next 4 years or so remained fairly stable at about 3.5. During the last year it has slowly started trending upwards and has gone up to 4.8 (checked last month), so I naturally have become concerned. I had an MRI and biopsy a few months ago: 28cc gland, G7 (3+4): Biopsy result:

A: Right apical PZ: G3+4 12mm 3/4

B: Right mid/basal PZ: G3+4 9mm 3/3

C: Left PZ: Benign

I'll post more detailed results in comments, in the unlikely event anyone is interested!

Despite being single, and not particularly sexually active in recent years, like most, I've not given up hope of continuing to have some sensual fun and pleasure in the years ahead so sexual function is certainly a big issue as far as side effects go. Mainly for that reason, I've definitely ruled out surgery and have been weighing up the pros & cons of HIFU versus HDR brachytherapy as a monotherapy. I would certainly consider SBRT/ proton and other focal therapies too but they are not easily available here in the UK on the NHS. The HIFU and brachy treatments would be at t two leading hospitals in their field with many years experience and research. The HDR brachy would be delivered in two fractions a day apart. I'm aware Tall Allen has some concerns about HIFU but I have been told I am a suitable candidate and that brachy could still be an option if I decide to go for HIFU and get a recurrence.

My heart say go for HIFU....I might be one of the lucky ones with no need for further treatment, if at all, for many years - and in the meantime, hopefully, the side effects would be minimal. BUT, the head says the evidence for HDR brachy as monotherapy is more compelling. I'm aware it's a very personal decision, with no right or wrong answer, but if anyone has any thoughts or issues that might be pertinent to the decision making process, I'd love to hear from you. Thanks for reading!

G

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Outsiders
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Outsiders profile image
Outsiders

MRI of prostate with contrast:

Clinical Indications:

On AS Right sided 3+4 PSA rise to 4.68 ? progression

Findings:

28 cc

The whole peripheral zone (with sparing of a little of the anterior horns) shows intermediate T2 signal, fairly bright enhancement and moderately restricted diffusion. Within this, we can see no convincing focal lesion and as before we score 3/5 throughout.

No evidence of pelvic lymphadenopathy.

Opinion:

We have scored 4/5 before but even on reviewing previous scans I cannot convincingly define a focal lesion on the right to assess progression. Considerable low to intermediate grade disease could be obscured by the background change in each peripheral zone, and therefore with a significantly raised PSA density we probably have to consider biopsies to monitor in someone of this age. We should discuss in a meeting.

Biopsy histopathology:

A: Right apical PZ

B: Right mid - basal PZ

C: Left PZ

CLINICAL DATA:

Malignant tumour of prostate.

MACROSCOPIC DESCRIPTION:

Three pots

A. Right apical PZ: Four cores of tissue largest measuring 17mm.

B. Right mid basal PZ: Three cores of tissue largest measuring 16mm.

C. Left PZ: Six cores of tissue largest measuring 15mm. (RB)

MICROSCOPIC DESCRIPTION:

A. Site of the biopsy: Right apical PZ

Total number of cores: 4

Carcinoma present: Yes

Number of cores involved: 3

Type of carcinoma: Acinar adenocarcinoma

Gleason score: 3+4

Percentage of pattern 4: 10%

Cribriform pattern: Absent

Max tumour length: 12mm in a 16mm core (75%)

Perineural invasion: Yes

Involvement of adipose tissue: No

B. Site of the biopsy: Right mid - basal PZ

Total number of cores: 3

Carcinoma present: Yes

Number of cores involved: 3

Type of carcinoma: Acinar adenocarcinoma

Gleason score: 3+4

Percentage of pattern 4: 20%

Cribriform pattern: Absent

Max tumour length: 9mm in a 14mm core (64%)

Perineural invasion: Yes

Involvement of adipose tissue: No

C. Site of the biopsy: Left PZ

Total number of cores: 6 benign prostatic cores including seminal vesicle type

epithelium/

Carcinoma present: No

HISTOLOGICAL DIAGNOSIS:

A, B, C. Prostate biopsies:

Adenocarcinoma in 6 of 13 cores.

Laterality: Right

Gleason score: 3+4

Grade group: 2

Max tumour length: 12mm

Perineural invasion: Yes

NYC_talker profile image
NYC_talker in reply to Outsiders

I believe doing brachy is a wise choice, and agree with what Tall_Allen says and of course he has the studies to back it up.

Also wanted to point out that a great deal of ED among prostate cancer patients results from aging, not treatment, something else Tall_Allen has also pointed out with studies. So take that 30% with a heavy grain of salt unless you can see age breakdowns. If you're younger your chances of avoiding ED are much higher.

The general rule of thumb I was told by my urologist regarding RT is that wherever you are going into treatment, is where you'll be coming out, with possibly -- possibly -- a slight decline. Of course there are those with much different experiences across the whole spectrum, but that's what he saw on average, and he's treated many people over a number of years.

In my case erections actually got better. I had a similar profile -- 3+4 -- and went with LDR brachy in January of 2022. Same idea, but with permanent seed implants. About a week before treatment they will put you on low-dow Cialis or another ED med, as the meds work as a prophylactic therapy to help prevent ED. Keeps blood flow going and keeps everything down there open and resisting the radiation's tendency to close things down. And you take it for a few months after treatment, or, as my RO suggested, indefinitely, as it doesn't hurt and can only help. (I'm still on it.)

It's low dose -- 5 mg, as opposed to 20 mg, which is what someone treated for ED would take regularly.

Nonetheless, that low-dose has given me a bit of a kick, both in that week before treatment and now after treatment -- faster, firmer, longer erections. Perhaps I was experiencing a slight ED before, even if it didn't seem discernible. Who knows? But I clearly haven't experienced any decline since treatment, and it's been just about a year (Jan 4) and am actually having better erections.

Tall_Allen profile image
Tall_Allen

If you can get HDR-BT monotherapy from Hoskin, that would be my first choice; or SBRT from Alison Tree.

HIFU doesn't work. There's a reason why it hasn't been approved as a treatment for PCa in the US and Canada, and is only available on a clinical trial in the UK.

Idk why you think the side effects are any better with HIFU- they aren't. And the same salvage therapies are available.

Outsiders profile image
Outsiders in reply to Tall_Allen

Thanks for replying Allen. The brachy would be at Mount Vernon hospital, where Peter Hoskin is a consultant oncologist. I’m currently under the care of UCLH, where Prof Emberton leads the HIFU team. My reading of his papers and side effect outcomes suggests that it is a treatment that can be effective in the short/ medium term at least.

After thinking I might go down that route following the shock of the initial diagnosis, I am now however leaning to the HDR brachy as a monotherapy, especially after speaking to one of Hoskin’s team (Peter Ostler), who explained the procedure and outcomes from their years of treatment. He says that 30% of patients do suffer from erectile disfunction, which is the only thing that gives me pause compared to the stats for HIFU..

I really appreciate all the research you have done and your advice. It’s been most helpful and I may never have been aware of brachy as a monotherapy’s efficacy if I hadn’t found this site.

Big issue now is how quickly I schedule treatment. Beginning to feel I should just bite the bullet and just go for it and stop dithering.

Tall_Allen profile image
Tall_Allen in reply to Outsiders

HIFU has the exact same ED rate (20-30%):

prostatecancer.news/2021/03...

thelancet.com/journals/lano...

That was my first objective, after curing my PCa. I took daily Viagra for 6 months. Something worked, thankfully.

Emberton/Ahmed is as good as it gets in the UK. Arguably, the MRI-targeted HIFU (Klotz and Ehdaie) is better. But what is the point of reducing side effects (if it did) if it doesn't do job #1. To be fair, Ehdaie sees it as a way of extending AS, but 60% still had cancer in the prostate after MRI targeted treatment..

Ribotom profile image
Ribotom

Why are you dead set against surgery? As you say, there is no definitively right or wrong answer for your metrics — it is a personal decision, and reasonable people with the same metrics may make different choices. That said, have you thought about how you and your doctors will monitor your lack of disease after treatment? One great thing about RP is that you know your PSA should become undetectable, and the PSA number is an extremely sensitive metric to follow to monitor any recurrence. I too was on the young side (55) at diagnosis, and I am quite glad to have a sensitive measure of recurrence available to me.

Outsiders profile image
Outsiders in reply to Ribotom

As mentioned, I do hope to have many years of a potentially active sex life ahead of me…so potential side effects of treatment on erectile function are the most important consideration for me. Most treatments have very similar long term success rates, as far as I can see…so the decision comes down to the side effect profile. I think it’s pretty obvious that surgery is likely to have the biggest impact on urinary and erectile function. Of course, some people just want the cancer gone for sure so I can understand why they are prepared to take that option.

EdinBmore profile image
EdinBmore

Whichever form of treatment you decide: be sure to do penile "exercises;" penis pump and some form of ED meds (the study I was in recommended and provided 60mg of sildenafil 3 times a wk for 2 yrs) from the start. Your heart may not be into it, but you'll be glad you did in the long run.

EdinBaltimore

Piano777 profile image
Piano777

Look into NanoKnife IRE focal ablation. Uses fast high voltage electrical pulse in a very controlled field. No heat or cold so very tightly controlled zone and very little to zero side effects.

HIFU uses heat and zone is not as well controlled. You are trying to boil the middle of the kettle while leaving the outside (where the nerves are ) cool.

NanoKnife can do that. Kills cells by causing nano holes in cells. Technology has been around for 10 plus years and used on very sensitive areas of body like pancreas

I had it done 6 months ago on G7(4+3) and zero side effects.

Alexandr1 profile image
Alexandr1

You might consider Tulsa Pro. I realize that many on this board are far more experienced and have strong views on this subject, but I chose it because if it doesn’t “cure” (and so far, so good for me 38 months after) it at least slows down the process and buys time for either a repeat, or another alternative. For me and most others, no ED, from literally one week after. Again, not perfect (most “sparing” procedures aren’t) but worked for me so far, and will gladly do again if necessary in a few years. Recovery? I was playing catch with neighbor kids 36 hours after….good luck with whatever your choice, am just glad we have choices, unlike my dad who died from PC when he was 70.

Piano777 profile image
Piano777

Just saw you are talking to Dr Emberton at UCLH. He is spearheading NanoKnife there.

uclh.nhs.uk/news/uclh-first...

Also info from prior research papers

ncbi.nlm.nih.gov/pmc/articl...

Outsiders profile image
Outsiders in reply to Piano777

Thanks - I will ask about it, see if I’m a potential candidate and investigate if so.

Outsiders profile image
Outsiders

Appreciate the thoughtful reply Fastonskis. Any decision is, of course, based on an individual weighing up the cost-benefit. I was moving towards the HDR-BT monotherapy, without the adjunct treatments, as the cost (extra time spent in hospital + side effects) for me don’t seem to be worth the potential gain in effectiveness…undoubted tho’ that would be. I will consider a bit further before reaching a decision, thanks.

Seasid profile image
Seasid

You are British and have a reciprocal Medicare card when visiting Australia with the proper referral you could have SBRT of your prostate here in Sydney, Darlinghurst Australia at Genesis Care.

You should just say that you want to be treated with the MRI Linac.

Medicare would cover you. You would have out of pocket cost maybe around 3000 Australian dollars.

I had that SBRT with MRI Linac at genesis Care. You need to stay in Australia only around 2 weeks long.

I had 38 Gy delivered to my prostate in 5 fractions. You have to be able to stay still for one hour. Plus probably you shouldn't be claustrophobic (i am not a psychologist but I believe so). It was easy for me. You can also get a PSMA PET scan in a local hospital. The genesis Care RO will give you a referral for the PSMA PET scan so he can see where is your cancer. In one week you will get the PSMA PET CT with contrast scan.

Probably you don't need more than a month to stay in Sydney. Call genesis Care here in Darlinghurst NSW 2010.

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