More advice on Focal Therapy (Cryotherapy) please

Hi WH67

Can't really answer your questions as I am in a similar situation as you (just found out, Gleason 7), scratching around for some concrete answers but just coming to the conclusion that there aren't any and everyone is different. 

There is clearly no 100% cure. There are however treatments with good outcomes, but they all come with side effects that may/will affect your quality of life.

I tend to be a risk taker, so HIFU/Cryotherapy do look attractive, but if you are not, then I can see that surgery could be a good route as long as you can accept the high risk of side effects.  For some reason I am really anti hormone therapy, but I have yet to meet with the Oncologist who I am seeing on Wednesday, so will probably change my mind, yet again.

Would be interested to know what trial you are being offered, as I am considering being referred out of my area onto one.

I am also happy to chat over the private message system, as it really does help to talk.

All the very best

Robin

WARNING: Mentions of "Cure" follow:

With a localised cancer, and a 'young' age, it's vital that you remember that Prostate cancer is a marathon, not a sprint: you should be thinking about the next 20-30 years, not the next five. In other words, you should be looking at treatments that offer a cure.

Yes, many people ARE cured of prostate cancer; the problem is, that you don't know you're cured until the post mortem, because it could pop up at any time. But way over 50% of men taking a 'curative' treatment die of something else before the PCa gets them. So we tend to talk about remission.

And be clear on this too: PCa doesn't kill you. It's the metastases that do the damage. It's all great fun obsessing about the prostate tumour and 'controlling' that. But that won't stop metastases 10 years down the line, at least, there's little evidence of it (there is SOME evidence that controlling the index tumour reduces the damage done by the satellites (its metastases), but not enough to promise significant life extension or a major change in quality of life.

But my major point is this: as a healthy chap, you have 20-30 years ahead of you. Think carefully.

Read around this forum, there's loads of ideas to be thinking about.

And read The PCa Toolkit

WH

Trouble is being offered Cryo as part of a trial just adds to the confusion about which way to go.

The two mainstream treatments are surgery and Radiotherapy, both very successful but not without side effects especially surgery 

Hi fu and Cryo are both alternatives but there is not enough info to say how successful they are in the long term

You don't say what your PSa is , I presume lowish.

I have read that with Cryo there can be ED problems and a PSa under 20 is best.

If it was my choice between Cryo and Hi Fu I would go for HiFu, remember, only my opinion.

Do consider RT though, it's a good alternative to surgery if you are concerned about ED.

Take your time to consider all options and do come back on here for any advice required.

Best wishes

Steve

Hi WH67

Thank you got your friendship request 

yes I got diagnosed following MRI Biopsy and had focal cryotherapy in January 2017. I was 3 +4 Stage 2a localised to Prostate. I was offered all different treatment and opted for focal cryotherapy as it sounded the best for retaining a degree of sexual function and minimising urine retention problems. I was swayed o suppose that my local hospital referred me to UCLH who were specialists in this type of treatment. My psa was 8.9 when diagnosed and immediately after the op the nadir was 0.57. I have had psa tests every 3 months since and although there have been a couple of drops it has gradually risen to 2.44. I have had 2 MRIs in that time and there appears no evidence of cancer to date although cryotherapy does scar the prostate pictures sometimes. I have been given a PI Rads score of 3 from the MRI which means presence of cancer not showing / indeterminate. Consultant phoned me last week and is happy with MRI results. I am to continue 3 month psa testing.

So overall I am reasonably happy although there appears inadequate science to evaluate what psa levels should recover to following this focal treatment. Urine retention  seems ok but would stress that I have suffered from Erectile Dysfunction since the op and this has been a problem for me. Difficult to blame cryotherapy for this cos other treatments can cause similar ED. 

I hope the above helps and my best advice is to evaluate all treatments as best you can but in the end you will go with your gut feel

Best Wishes and speak with you again soon

Stavros

Hi Steve

Thanks

My PSA is 2.4

Seemingly I'm not being offered HiFu....it's wait & watch, cryotherapy, radiotherapy + hormone treatment or prostatectamy.

I literally change my mind every 30 minutes. I've read all the info sent to me and online, but I want someone where I am to say "well we've looked at YOUR case and we think..."

I'm not having any face to face meetings because of covid and I have to say whenever I speak to someone I do very much feel like just a number on a list, but that could be my generally down-right-now mood playing on my mind.

That psa is very low for someone with prostate cancer 

As another option why not consider RT without the hormone therapy.

That would depend on meeting various criteria including location of tumour within the gland and getting a specialist to agree to this as a way forward,just a thought.

Steve

Hi Steve

Very much feel like I’m not being given options  re RT with or without hormone treatment...feeling so far is very much this is what you’ll do. 

To be honest though I have not yet had my scheduled chat with radiologist so that’s certainly something I could put to him/her. 

Unknown said:

but I want someone where I am to say "well we've looked at YOUR case and we think..."

You need to ask why your MDT came to the decision on the recommended treatment plan.  I would then examine with the oncologist that decision as well as get them to explain why the other treatments are not appropriate, and I mean ALL the other treatments.

I am meeting my oncologist for the first time today and I have drawn up a long list of questions covering the above.  Happy to share if you want.

I would however say that I, like you, are at the beginning of my journey so no expert in this. 

WH

With a normal PSA how was the cancer discovered?  In other words , what prompted a biopsy? 

I presume/hope that  u have  had a Mri , it could be worth asking for a copy of the MRI report to determine exact size/location of tumour.

Regards

Steve

Unknown said:

RT with or without hormone treatment

That's like asking for surgery, but not deeper than 5cm. They don't give hormones for fun, they give them for two very well researched reasons:

Hormones before the radiotherapy will shrink the tumour, giving a smaller but more specific target, enabling the beams to be better focussed, and do less damage to surrounding tissues, with a much smaller risk of secondary cancers down the line.

Hormones given after the RT, for reasons I don't pretend to understand, allow the benefits of RT to extend for much longer, significantly increasing the chances of remission or even cure. This has been proven by many years of experience and research, though continuing research into varying the dose and timing, with improvements into RT over the years, has shown that the HT can be reduced to 1.5-2 years with almost the same benefit, in many cases.

In most cases, RT without HT just doesn't get the job done.

To some extent, you need to trust the MDTs' combined wisdom, skill and experience - I can't imagine you'd want to remain conscious during surgery in order to supervise the surgeon, and I'm surprised you feel the need to tell the radiotherapist how to do his job!

I had the full three years HT after my RT - just before they changed the rules. I hated every minute of HT, but  - so far - I've had almost 5 years remission, so I'm not complaining.