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Cryotherapy completed

User
Posted 04 Jun 2014 at 13:27

In late 2011 I went to my GP for a routine blood test. I asked the nurse if I could have a PSA at the same time. She asked me if I had any symptoms and I didn't but I have close relatives who had prostate cancer and I'm over 65 so I thought I should have a PSA.

The lesson in this is that if you are expecting a GP to look after you, you are making a big mistake. The onus is on you to make sure you are well informed and getting adequate screening. Especially for bowel and prostate cancer. Preferably before you have symptoms.

The PSA results came back at 6.05 and the GP, very reluctantly I must say, referred me to the local hospital in Feb 2012. The GP is obliged to refer me at this PSA level at my age. The local hospital did the usual examinations and 12 core TRUS biopsy. The results showed no malignancy. I was asked to come back in May for another PSA.

The May PSA had risen slightly to 6.8 so the consultant recommended an MRI scan in August 2012.

In September 2012 the MRI "does appear to demonstrate some signs of abnormality" and I need another TRUS biopsy. In October the second biopsy confirmed Gleason 3+3 adenocarcinoma on the right side of the prostate which was classified as "low risk". I was advised to continue with "active surveillance". This involved a PSA test every 3 months.

Meanwhile my wife had been reading everything she could about the subject and found out about a clinical trial that was being done at one of the London hospitals. This involved studying patients which had similar conditions to mine with a view to focal therapy treatment. Just treating the cancerous areas without doing major surgery and removing the whole prostate. I attended a lecture in London on this subject and was very impressed by the logic. It was pointed out that TRUS biopsies are literally "hit and miss". I could certainly vouch for that. A much more accurate biopsy was needed before treatment was recommended.

I signed up for the NHS trial straight away and made an appointment with the London hospital in March 2013.

An ultra sound scan in London showed that I had a large prostate - in fact too large at 90ml to be used in the study. Nevertheless the consultant wanted me to go ahead with the study and promised me "the best treatment available". In my case it was likely to be HIFU.

In July 2013 I had a transperineal templated biopsy which involved taking over 40 cores with instruments guided by MRI. This was done in London under general anaesthetic but I travelled back home by train the same day, albeit with a catheter inserted.

This biopsy confirmed Gleason 3 + 4 and I needed treatment. Because of the positions of the cancers it was considered that HIFU would not be effective. Cryotherapy was the best option.

All the findings were sent back to my local hospital and I arranged another appointment. This time I saw a consultant I hadn't seen before and the results from London were not in my file. But I had a copy with me. The local consultant told me that he "knew nothing about cryotherapy" . I found this astounding . The only treatments he could offer was radical surgery or radiation. My brother had been radiated and my close friend had just had surgery. I didn't fancy either if it could be avoided.

The doctors in London had said that I may need hormone therapy prior to the cryotherapy and this may not be the best thing if I were to opt for the radical surgery route. I asked the local guy about this and he didn't know. This meeting confirmed where I was going next - London.

The doctors in London were available by phone and answered every question I had. To say they were impressive would be a vast understatement.

I had the cryotherapy treatment in October 2013. I was out of hospital the same day and travelled home by train - with catheter again for two weeks but this is a minor inconvenience.

At a follow up appointment in December 2013 I was given a four month wait to let things settle down then another MRI scan to see how things were.

I had the MRI scan in April 2014 and was informed that the major cancer area is gone and it's PSA monitoring every 3 months from now on. My PSA is still 6 but they say that's expected from such a large prostate.

All my equipment is in full working order and I can easily go through the night without getting up to pee. I'm absolutely delighted with the cryotherapy route and owe it to my wife for being so diligent in her research.

What I've learned is to find the best people you can. Consultants only offer you what they can do and it may not be in your best interests.

 

User
Posted 30 Nov 2015 at 23:57

That's an interesting story Bob but it is against the rules to name doctors or other medical staff so perhaps a good idea to edit your post before the moderators come along?

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

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User
Posted 04 Jun 2014 at 15:05

This is really interesting. Cryotherapy was never even mentioned during my consultations and frankly I had only a limited idea what it was until I did some reading in the last few minutes. I really hope your treatment works for you and you continue to recover well. Good luck.

User
Posted 04 Jun 2014 at 17:25

I think it is still correct that Cryo is only available ( in some hospitals only obviously ) as a salvage treatment. Or privately. Or current trials ?

For anyone considering Cryo, I'd be inclined to check out the success rates as maybe this is why it is not offered alongside surgery, EBRT, Brachy etc.

For early diagnosed & localised tumour it could well be an alternative but I wonder why it has not been taken up more. Does the diagnosis criteria need to be tight for example ?

Please correct this if you know different in your area http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

 

 

J.

Wishing you great success & please keep us informed. We have relatively few postings on this subject & it would be good to hear of more cases.

User
Posted 21 Jul 2014 at 14:23
15th July 2014. Latest PSA is 4.68. Consultant regards this as "encouraging".
User
Posted 21 Jul 2014 at 19:09

Well done for being so assertive about your treatment, my partner had to request a PSA test quite forcefully last year, he was over 60, and had some very frightening acute symptoms, later confirmed advanced disease. Like your wife, I have chased up lots of info on his behalf, you can't guarantee you are told all these things ! I wish you all the best,

 

Fiona.

User
Posted 24 Sep 2014 at 22:56

I totally agree that you must carry out as much research as possible before submitting to any treatment. I too have just had cryotherapy after hormone therapy which was stopped right after the cryotherapy and is now slowly leaving my system thank goodness. My PSA is down at 0.3 and monitored every 3 months but my testosterone is also down at castration level still (0.4) so am now trying to find ways of increasing it. Next MRI and check is in April 2015 but I am very optimistic of long term success.

Terryd

User
Posted 22 Oct 2015 at 18:06

I have had two contrast MRI scans in the past year and follow up PSA tests every 3 months.

The latest position is that my PSA is stable under 6 (normal as I have a very large prostate - 100 ml) and I'm told there is nothing to be concerned about. Go away and do another PSA in 6 months.

I am delighted with the level of treatment and expertise I have encountered. Had I listened to my local hospital, I am sure I would have been over-treated by radical surgery. By their own admission the local consultants "knew nothing about cryotherapy". They offered me what they knew about and could do. I'm a consultant engineer and if there's something in my field I should know about, I make it my business to find out about it.

 

User
Posted 30 Nov 2015 at 23:49

Hello Jervis,

Looks like you had a tough time getting the Dr's on side, and then having to wade through the treatment plans to find one you felt comfortable with, glad to see that you had the tenacity to stay with it.

I was diagnosed with Pca in 2005, out the blue so to speak, no symptoms, no family history of it, nothing. At the time I was living and working as an engineer in the shipyards of Halifax, Nova Scotia, Canada. The GP I had there advises all men over 55 to take the PSA test, mine came back at 4.8 nothing to worry about as that's only slightly over the normal range for my age, but thanks to her diligence she sent me to a Urologist to have a 12 shot biopsy done.

That's an experience in itself, I near leapt off the bench but there was more to it than that, if I'd known then what I know know about prostate biopsies I wouldn't have had one, I wasn't told the risk involved in them doing a biopsy, it's a small risk but we should be told about it.

The result of the biopsy and an ultrasound was that I has two small tumours each one staged at Gleason 3+4, so it looked like this thing had got a bit of a start on me without me having any signs or symptoms at all, seems that's the way it is for many of us.

I'll never forget that day that the Urologist called me in to tell me that I had cancer, that shook me to the core, I thought it was a death sentence, but it's not, there's worse cancers than Pca, you have at least a fighting chance against it, but what do you fight it with !!!   

It was like waking up one morning to find myself in the middle of a minefield, desperately trying not to make the wrong move.

It's almost a postcode or a geographical lottery as to what treatment you're offered, too easy to find yourself loaded on to a conveyor belt heading towards the "this is what we do in this part of the world". Hardly seems to matter that some other treatment plan may be better for you, "if it's not on our shelf then you won't be getting it".

I spent hundreds of hours on the www bringing myself up to speed as to what Pca is all about, the survival rates of different therapies, none of which at the time {10 years ago} seemed to have a lot of appeal.

The conveyor belt in Halifax, would have slid me onto a table to have Radical Prostatectomy, but after seeing photo's of the scars left on some of his patients I'm thinking his assistant must be one of the resident blue sharks out of the harbour so I walked away from RP, add to that I just didn't fancy taking on some of the side effects that can come with RP.

I was offered Radiotherapy but after {by chance} taking to a guy who'd gone that route only to have his colon burned causing him to suffer from long term faecal incontinence, yea, I know, million to one chance, well not quite, but a chance I didn't want to take.

I was also offered Hormone therapy, but the fact is, that's never cured anyone, at best it can slow it down, at worst it can flare Pca up !

The worst part about being told you have cancer {of any sort} is the shock and awe of it, most folks still think it's a death sentence, it's not, but beware of the idiots {maybe well meaning idiots, but idiots all the same} who go around telling folks that magnetism could cure you, or, worse still that drinking your own urine can cure cancer.

Sadly I knew a bloke who {in desperation} decided that was the way to go, refusing all other treatments he didn't last long, I think of that poor lad many a time, you can loose your life if you make the wrong choice, and who amongst us is capable of thinking straight when we are under the gun.

Thanks to the time I put in scouring the www I found what seemed to be the kinder / less invasive options of HIFU and Cryo.

HIFU just has to be the least invasive Op {if you can even call it an Op}, and the survival rates were as good as anything that the old "gold standards" could offer, so I went for that...

I had a choice of having HIFU in the US {a couple of thousand miles away from where I was working at the time} or I could have it at Stepping Hills a 30 minute drive from family in Greater Manchester, so, fancying gifts of Lucozade and grapes I went to see the folks at Stockport.

Things were going well until they did a scan that showed a build up of calcium in my prostate, enough of it to block the energy of the ultrasound waves that would be directed at the tumours, so, HIFU was a non runner for me...

Thankfully I had a second string, CRYO, either in Germany or in Sunderland Royal, I went for Sunderland, mainly because it was still on my own patch so to speak. It cost me £8,417 to have the Cryo done there, money well spent, the surgeon there is recognised worldwide for his skill and knowledge of Cryo for Pca. I couldn't have been treated more skillfully or more respectfully than I was by the staff at Sunderland Royal. If your life might be in the balance then you couldn't be in better hands than theirs.

It's now over 10 years since I had Cryo, and since then my PSA has never been higher than 0.5, the Op was a nerve sparing Op so they didn't kill the whole prostate, so you'll never get a zero PSA, but the Cryo did it's job, I'm still here {back in the UK since I retired} and I have no residual side effects or impacts on my quality of life at all.

One thing I have learned over the years though is, when you talk to blokes who have had one treatment or another they will insist that you should have what they had, maybe misery likes company, but, I'm telling it like it is, don't go for what I had, GO FOR HIFU !!! if that's not an option for you then go for the second string,  Cryo...

No matter what route you take I wish you all well, it helps to believe in whatever path that you chose...

Bob.

 

 

 

 

 

 

 

 

 

 

 

Edited by member 01 Dec 2015 at 00:39  | Reason: Not specified

User
Posted 30 Nov 2015 at 23:57

That's an interesting story Bob but it is against the rules to name doctors or other medical staff so perhaps a good idea to edit your post before the moderators come along?

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

User
Posted 01 Dec 2015 at 02:00

Cryotherapy is pretty rare in the UK and where it is given it is usually as a salvage treatment for failed RT. When I had a consultation for this reason earlier this year, I was told that within the study I would either be given Cryotherapy or HIFU. The latter was preferred but if the cancer was in a position that was difficult to treat, Cryptherapy would be given. This is in line with what Bob experienced.

It's also true that many men have whatever treatment is on offer at their local hospitals, possibly reducing options for which they may be suitable.

There is also a risk that because a patient is told by some unqualified person or read that someone has done well by having a certain treatment, a newly diagnosed man assumes this treatment will be best for him. This is not necessarily so as it may not be his bests option, if one at all.

Hope both having had Cryo continue to do well.

Barry
User
Posted 01 Dec 2015 at 21:04

Hello Barry,

Hard to say why Cryo hasn't gone mainstream in the UK, there could be a number of reasons including the resistance to change by people and by organisations, but whatever the reason it's not because it's less effective than RP etc, not to mention that Cryo and HIFU are less likely to impact a mans quality of life {or his psyche}.

As for the advice given to men, well, few folks are able to take a diagnosis of cancer in their stride, the vast majority know little to nothing about the prostate that they've been carrying around for 50 years or more, even less about what to do when it turns cancerous. A good number of men just want to be rid of it and will grab at the first straw offered to them.

As for unqualified persons, well, would you say that the Consultant who told Jervis that he "knew nothing about cryotherapy" was a “qualified” person ?

Of all the Dr's, Consultants and Specialists that I spoke to in the Canada, the US and Europe I never came across a single one that “knew it all” they had expertise in their own field but little experience or even interest in other treatment plans, I guess that's how it is in most {if not all} trades or professions.

The thing is, when faced with a mortal enemy the more we know the better our chance of survival.

Maybe {just maybe} some of the folks who have found there way out of the minefield that Pca drops us into are as qualified as {almost} anyone when it comes to advising others.

I wish I could have had someone to lean on when I was first diagnosed, someone still “alive and well” 10 years after diagnosis, that would have calmed the panic that I felt in those early days. So it helps to talk to a survivor, you don't have to follow their treatment plan, but it helps to find out that Pca isn't always a death sentence.

The problem that I and others have experienced talking to “qualified” persons is they rarely {if ever} mention treatment plans other than the ones they provide. When the only tool you use is a hammer everything starts to look like a nail.

It's hard enough for us to chose what {hopefully} is best for us, but the choice should be more than “any prize off the bottom shelf”.

No matter who you speak to, or what you decide qualifies them to advise you, it's difficult to sort the wheat from the chaff, just be wary of the guys who insist that you must have what they had, steer well clear of anyone who has such a rigid opinion.

Look at all the options available to you, depending on where you live that might eliminate Cryo and/or HIFU, but whatever path you chose be aware of the potential downsides, the impact that ED or incontinence might have on your quality of life.

I traveled over 3,000 miles to have HIFU at Stepping Hills in Stockport, but, due to the build up of calcium that didn't pan out for me. Thankfully the Cryo at Sunderland Royal didn't just save my life but my quality of life too, I'll spend the rest of my days indebted to the folks at Sunderland Royal.

Edited by member 01 Dec 2015 at 21:13  | Reason: Not specified

User
Posted 01 Dec 2015 at 23:19

Hi Bob,

I note your experiences and agree with your conclusions.

With ever expanding types of treatment and refinements, it is indeed difficult for consultants to keep up with all developments in their own specialities as well as others. But the point I was making was and it has been mentioned to me, that a friend of a friend or somebody someone mentioned in a pub, had a certain treatment which worked for them so why not have that? I think it makes sense not to consider any individual success or failure as it is just that. Qualified consultants may lack an in depth knowledge of some other treatments in which case you can seek out one that does. Many people fly all over the world for a holiday but are not prepared/able to travel for possible health choice/advantage even within the UK, not criticism, just an observation - personal decision/circumstances.

When first diagnosed with PCa with a T3A and surgery being ruled out along with HIFU, I managed to get an appointment with a Professor whose papers I had read. He was an expert on radiation including hadron therapy and what was available worldwide. In the event I only travelled to Germany for treatment, though this involved a stay of over two months plus a separate week for preparatory work including six scans. Then there were subsequent visits for check ups. I now have to travel to London from Devon for scans and treatment. Like you I have done what I can to give myself what I feel is the best chance of beating PCa.

Of course giving and receiving support and all that entails is of benefit not only to forum members but non members also and this forum has been important on my cancer journey.

Barry
User
Posted 02 Dec 2015 at 00:20

I hear you Barry and I agree on all points, especially how folks will find their way to Bodrum but can't find their way further than a bus ride to their local hospital. Add to that, few people have what it takes to second guess their GP or anyone in the medical field, I guess that's a cultural thing, a way of showing respect and regard to people we trust with our lives in their hands, but times have changed, we aren't as ignorant as we used to be, the www can be a powerful tool when put to serious application.

It's a hellish situation to be in when you're diagnosed with cancer {of any type}, we immediately find ourselves in at the deep end, knowing little if anything but all of a sudden {as you say} some bloke in the pub, or worse still our brother in law can tell us all about it.

Some folks {but not many} have the ability to sort the wheat from the chaff, thankfully I spent 40 years in Engineering QA / statistical analysis, that kept my mind sharp and convinced me never to bet my life or the lives of others on the so called expertise of others.

But who do you trust, and where do you find the the right folks when your life is on the line, and your in a RUSH to get something done.

I've attended informal Pca meetings in Canada and in the UK after the event so to speak because I knew how being diagnosed put me through the wringers, I've been in some tough situations in my time but being told that I had cancer made me sweat more than the time that I had a contract on my head, a plot to kill me {in Canada}, thankfully I dodged that bullet too, see the link below to that saga...

The 6 Million $ Man {sort of}...

After the Cryo at Sunderland Royal life started to get back to normal {if ever it was for me}, but knowing how hard it is to walk the path alone {well, we feel alone} I wanted to give encouragement to lads on both sides of the pond who had been diagnosed with Pca.

I met a lot of decent lads at the Pca meetings at Christies / Manchester and we talked about what we were going through not just physically but emotionally, I saw a lot of lads helping each other one way or another, a lot of the time by just listening not something men are known for, but something we are capable of.

Sometimes it was just meeting up for a pint in a pub, other times just going for a walk and talk. A lot of the newcomers would turn up trembling like a leaf, but once they spoke to men who were YEARS down the road since being diagnosed their stress levels came down, it's good to have a buddy who cares, one who's been there, done that, and lived to tell the tale.

Sometimes though the things some folks promoted used to exasperate me, many a time I had to hold myself down when folks advising other to drink their own urine, or hang magnets round their nether parts. I have no time nor tolerance for stupidities like that, more so when it could cost someone their life as it did for the lad from Stoke. Maybe {just maybe} these gob****** mean well, but who needs advice from idiots when your life might be on the line !!!

The talk in our meetings wasn't always about RP etc, or Cryo / HIFU, I remember one bloke who swore by Celebrex {an NSAIDS anti inflammatory}, he took it by the bucket load, well, 2500mg a day, 3 months on, 3 months off, if memory serves me well, and he's still alive today 12 years after he was diagnosed. There was some research and evidence that Celebrex {in particular} had turned back Pca and other cancers including bowel and lung cancers.

Like any medication there's a risk involved, especially when you are taking 10x the recommended daily dose, but, the man was an educated man, he'd done his homework and he was prepared to bet his life on what he'd found, so far so good for him, but as you say, cancers like people can be almost unique, there's no guarantee's in this life or death game.

Do you know if anyone has ever mentioned Celebrex in here as an option ?

All the Best,

Bob.

 

 

 

 

Edited by member 02 Dec 2015 at 00:34  | Reason: Not specified

User
Posted 10 Feb 2016 at 16:15

10 Feb 2016

PSA down to 4.95 - still monitoring every 6 months - so far so very good. Really grateful for my cryotherapy treatment. But one thing I never mentioned was the powerful imaging software linked to the MRI scanner. You have to have good information.

The 12 shot ultrasound biopsies should be banned. As one professor said to me "Nobody comes near me with a knife unless he has an MRI"

Edited by member 10 Feb 2016 at 16:20  | Reason: Not specified

User
Posted 26 Mar 2016 at 13:31

My father had cryosurgery when his prostate cancer was diagnosed about 20 years ago -- at the time, I think the procedure was considered experimental (this was not in the UK). It was apparently very successful, none of the life-changing side effects, and the cancer never came back. He passed away aged 94 years old earlier this year of other causes. When I was diagnosed myself in September '15, cryosurgery was never offered as an option (I asked my urologist, given my father's successful experience, but he said it was rarely done here and could be problematical). On the other hand, the laparoscopic surgery that I subsequently had probably wasn't available when my father was treated. My brother, who was diagnosed 13 years ago, had open surgery. I guess there are many ways to skin a cat.

I'm sure everyone who has had it is in agreement -- the 12-shot ultrasound biopsy is eye-wateringly horrible!

Marc

User
Posted 26 Mar 2016 at 14:32

When my biopsy results came through, there were four options put on the table, RP, RT, Brachy and Cryo.

Subsequently, probably as a result of scans, this was later whittled down to RT & RP.

But interestingly, the urologist when talking of Cryo, mentioned that he was the only one qualified to perform this in our region - apparently he had trained on Cryo in the United States.

Although I'm satisfied that it wasn't an option for me, it would seem unfortunate if suitable candidates were denied a treatment simply because they were seen by a different urologist.

 

Dave

 

 

Not "Why Me?" but "Why Not Me"?
User
Posted 26 Mar 2016 at 18:33

Most men with PCa have their treatment within the NHS. There is much investment in equipment like the da Vinci for Robotic surgery and different types of linacs for RT. There is also the cost of training surgeons and operatives in such treatments along with others that form part of a team. So there is a justification just to use what they have and are trained to do. There is little incentive to train staff, pay for and introduce alternative treatment such as HIFU and Cryotherapy, unless it is demonstratively less expensive and will at least be as effective/reduce side effects. Hence the use of these focal treatments within the NHS has largely been limited to studies where the treatments are still regarded as experimental. (Privately, they are more available but not to a great extent as yet.) Then as has been said, many consultants know little about treatment outside of surgery and RT and why would those who do spend time on explaining to patients options they could not offer?

After my PCa diagnosis in 2007, I researched various treatment possibilities, one of which was HIFU. I asked my consultant at the Marsden about this and he said it was usually only given as a salvage treatment but he would arrange for me to see the top HIFU man if I wished. However, he added that he knew little about this treatment though he understood the side effects to be worse than EBRT. This rather put me off HIFU treatment and I settled for two types of RT. Fast forward to 2014 and this same consultant referred me for salvage HIFU!

Barry
User
Posted 03 Jun 2017 at 21:08

Just had my annual CT scan. All looks ok. PSA up to 6.9 but consultant tells me that's not unusual for my large prostate - 112 ml. Monitor PSA every 6 months (I do it every 3 anyway and send them a graph) and let the hospital know if it gets above 10. Appointment fixed for another scan in 12 months time.

Edited by member 03 Jun 2017 at 21:24  | Reason: Not specified

User
Posted 01 Jun 2018 at 19:48

Just had my annual MRI scan to check on progress. Nothing new to add. In fact the scan looks better than last time.

Keep checking PSA and shout if it suddenly increases.

Now taking Finasteride and Tamsulosin to reduce the prostate size and avoid any urine retention problems. Finasteride also reduces the PSA level so that is something to keep in mind when monitoring.

Managed to avoid surgery for 6 years after being advised to have the prostate removed so very glad I didn't take that advice.

In fact seeing the guy who advised it next week so that should be interesting. 

 

 

 

User
Posted 01 Jun 2018 at 22:42
Good to know you are still doing well and look forward to further good news in due course.
Barry
User
Posted 02 Jun 2018 at 19:24

Originally Posted by: Online Community Member

Just had my annual MRI scan to check on progress. Nothing new to add. In fact the scan looks better than last time.

Keep checking PSA and shout if it suddenly increases.

Now taking Finasteride and Tamsulosin to reduce the prostate size and avoid any urine retention problems. Finasteride also reduces the PSA level so that is something to keep in mind when monitoring.

Managed to avoid surgery for 6 years after being advised to have the prostate removed so very glad I didn't take that advice.

In fact seeing the guy who advised it next week so that should be interesting. 

 

I am very glad to read that you are doing well after your CryoTherapy.   That was offered to me in 2015, but, I had zero confidence in it. I opted for RRP and am very happy with that choice.  

 

Maybe worth noting for others that surgery, of whatever type, works very well for very many.  However, you are happy with where you are and that is all that matters for you.

atb

dave

 

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 02 Jun 2018 at 23:41
Very interesting thread. My husband wanted a focal treatment but cryo wasn’t offered by either of the 2 urologists we consulted with in the UK so travelled to the USA for a FLA having rejected the advised RP route.

Great to read your journey. With cryo

 
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