is cryotherapy a good option?

User

Posted 05 Nov 2020 at 18:47

Hi. Im new to this site but have found it really useful to read all the information that is posted here so thank you all so much for that

Unfortunately like most people that have been diagnosed recently (August 20) making a decision about what to do next is mind boggling!

I've been offered Cryotherapy which seems like a good option as its not complete removal but Im finding it difficult to get any info especially from someone who's had it or if another therapy (RT?) might be a better option? Im a musician teaching sax, clarinet and flute so Im Im concerned about the recovery process regarding blowing etc after surgery

Active Surveillance is where Im at right now but it all feels so abstract as I feel healthy and fit. Im aged 58 , Grade group 2, PSA 8.8 and Gleason grade 3+4 ,T2a N0 M0

Any advice would be helpful

User

Posted 06 Nov 2020 at 01:56

Hi there and sorry you join us due to PCa. Although Cryotherapy is administered somewhat more in the USA, very few men have it as a primary treatment in the UK, consequently, there is not the depth of experience compared to Surgery and various forms of Radiotherapy. I hazard a guess that this route may have been suggested at a Private Clinic. NHS patients normally have their cases considered by Multi Disciplinary Teams and men are told told which treatments are open to them and sometimes but not always, are steered towards a particular treatment. In your shoes I would present my histology and scans where more mainstream treatments are offered to check that there are other options you could have. There are pros and cons for all type of Treatment. If one type was so much better in all respects the demand for it would outstrip all others vastly.

There is not a gulf between treatments from the view of success but more in application and potential side effects. In your case you want a treatment that will minimally affect your livelihood but you have to consider whether this trumps other considerations.

I suggest you download or obtain a hard copy of the 'Tool Kit' from the Publication Department of this Charity. Many have said how helpful they have found it. https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

Edited by member 06 Nov 2020 at 01:59 | Reason: to highlight link

Barry

User

Posted 06 Nov 2020 at 15:25

Thanks Barry - really appreciate you taking the time to reply and will download the toolkit you suggested

I'm on NHS and was offered this as well as RT or Surgery so wanted to check the options and hopefully make an informed decision

User

Posted 06 Nov 2020 at 18:10

Hi into21,

I don't think I have heard of anyone having cryotherapy on the nhs. It must be some new unit they have started up, from what I have read it seems a good treatment, the mainstream treatments are all a bit brutal. Keep us informed of where this is happening (no medic names though, that is against bulletin board rules)

Dave

User

Posted 06 Nov 2020 at 20:56

A small number of NHS centres are involved in a trial of focal cryotherapy - the downsides is that it usually needs a general anaesthetic and an overnight stay in hospital which might not be everyone's cup of tea during a pandemic. Focal cryotherapy might not be such an issue but in America, where there is more data, ED is a problem for a lot of men after whole prostate cryotherapy I think.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Nov 2020 at 22:10

Originally Posted by: Online Community Member

ED is a problem for a lot of men after whole prostate cryotherapy I think.

The Tackle Knowledge Empowers book says cryotherapy has a high incidence of erectile dysfunction. The PCUK Cryotherapy leaflet says much the same. I have wondered why - it seems that the ice balls often extend into the erection nerves.

Edited by moderator 16 Apr 2024 at 09:28 | Reason: Not specified

User

Posted 06 Nov 2020 at 23:36

I had Focal Therapy as a salvage therapy for failed Radiotherapy within the 'Forecast' trial at UCL (also referred to as UCLH). In this trial men who are suitable are treated with HIFU by preference but where unsuited for this, they are offered Cryotherapy. I was told this is because there is more experience with HIFU than Cryotherapy in the UK.

I did meet up with a man I used to know years ago and it transpired he had had Cryotherapy privately about a year previously in the UK as a primary treatment. He was doing well but ED was a problem for him. It is not right to make a treatment decision on how well one or even a few members are doing because they may not represent the experiences of most men. However, the individual I mention here with ED ties in with what Lyn says has been found to be a significant side effect in the USA.

Barry

User

Posted 08 Nov 2020 at 17:10

Thanks for all the replies to my question about cryotherapy and I'm going to use the links you've sent to look into it more

I suppose I saw it as some ideal "half way house" between treatments but now not so sure.

I know theres no silver bullet

Thanks again for the help

User

Posted 06 Dec 2020 at 08:45

I had cryotherapy in May this year as part of a trial on NHS (Gleason 3+4), PSA 5.1. Had few effects from the procedure other than having a catheter for a week. Left hospital same day. After 3 months my PSA remained unchanged but at 6 months has dropped to 1.9. Would recommend

User

Posted 06 Dec 2020 at 19:40

I'm going to have to say that, in my opinion, 6 months is a bit early to be recommending any treatment, especially one that is relatively new. No treatment is guaranteed, but for some the risks are better known than others.

According to the JohnHopkins Institute "The risk of permanent erectile dysfunction (ED) is very high with cryotherapy".

However, if it has been offered, I presume they have made the OP aware of possible side effects. Providing none of those happen it should be a quick recovery, because apart from the ED the potential side effects are not that far different from a transperineal biopsy.

User

Posted 01 Mar 2021 at 14:12

It is not that new. I had Cryotherapy in 2006 but it was not available on the NHS. Although treated he was unable to treat whole gland due to bowl obstructing him. Back in 2016 PSA stared to rise getting to 3.5, scans in 2017 and 2018 showed no real problems. But scan last year showed lesion and biopsy showed cancer in 4 out of 10 samples Gleason 4 plus 4. As it was in 2006. Peter51 quoted about erection disfunction, i did not suffer from this after cryotherapy but i was only 51 so age may play a big part in this

I have been offered RT/hormone or cryotherapy again. but going towards Cryotherapy again as it is quick and over with some discomfort

UPDATE: Had focal cryotherapy on the 19th March , catherter for 1 week after op. Recovering and hopefully back to normal soon. Think i chose the right option only time will tell

update again December 2021 Saw specialist, recommended the blue pills and penis pump. Very odd using the pump. the pills seem to work. So at present all is well

Update July

Second treatment of Cryotherapy seems to have caused nerve damage, it is said having again increases chance of ED. Tried a couple of times and no success. So going to get advice from GP or other

Edited by member 11 Dec 2021 at 19:57 | Reason: Not specified

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