Brachytherapy OR Prostatectomy

User

Posted 24 Mar 2018 at 15:48

Hope to get your views if you've had a decision to make on Brachytherapy v Prostatectomy

I've a Gleason 9 diagnosis after Template biopsy

NHS put me in touch with surgeon consultant who recommended Prostatectomy

Investigated HDR brachytherapy and Proton treatment as well and tbh getting nothing but totally conflicting information from each expert

Looking for guidance as it's a minefield with every consultant picking off each other as to which is best way to go. Hard for a lay person to make that decision with conflictory experts !
Thxs
Johnny

User

Posted 25 Mar 2018 at 10:52

Ann
Thanks for this
My partner very supportive and also challenging and SO helpful in helping me to decide ( no decision yet ) and has been in every conversation with me

I certainly don't feel alone in this decision thankfully but ultimately it has to be to an extent

The decision , like Speith and his caddy , will be an 'us' decision , only thinking fleetingly of the side effects versus the opportunity to get as full a life as possible with my young family

Thxs for your comments
J

User

Posted 25 Mar 2018 at 10:58

Ann
Just checking out the YANA website !! Very useful
Thxs
John

User

Posted 27 Mar 2018 at 14:36

John the print
Massive thanks for your post

I'm in the same mind actually , for all the reasons you said

The thing though that has changed my mind to the clarity of decision is the March 2018 survey of 2000 Gleason 9/10 patients over 5 years 2013-18 where mixed Brachytherapy v Prostatectomy had a 3% mortality rate compared to 13% removal and 12% rate on radiation only

It seems to me , for my level of cancer and T level , that given the lower mortality risk and lesser side effects I've got to go the brachytherapy way

As you say time will tell if it's a right decision and it's one we all have to make on our own circumstances and diagnosis and can't compare others

Appreciate you sharing your thought process re decision making and also your feelings now

Wish you all the best for continuing good health
J

User

Posted 30 Mar 2018 at 12:18

Hi Bollinge
Great you've taken a wider view of options and taken other treatment views (as I have being a newbie as diagnosed 6 months ago) from people on here who have been there

This thread and ALL the conversations and personal insight has been superb and massively useful . Thankyou to everyone who has posted

I've made my 100% decision to take on the theee way HT/Brachytherapy/ Radiotherapy as my treatment rather than a Prostatectomy operation or Proton therapy ( in Czech and investigated throughly )

It won't be right for everyone but on my T1c Gleason 9 diagnosis it's my decision based on:

1. Proton therapy
Even though their Wild West uber marketing brochure says they have a 99% success rate of cancer not returning in 5 years , for high grade cancer they say their rate falls to 79% which is no better than traditional routes . Oh and you pay £34,400 for the same potential result on stats

2. The results of the biggest survey measuring success rates of operation v brachy look strong in favour of brachy for Gleason 9-10 patients
In lack of ANY other comparative stats from anyone else this has made my mind
It's research by professionals and has my GPs view that it's 'clarity at last as best way to go' and even my surgeons view that this will be a 'gamechanger'

It may or may not mean anything about the future as it's only history , but in a role of helping others be informed to use as part of their decision making of prostatechtomy v brachytherapy , I've set out the findings below

INVESTIGATION
Published 06/03/18
By
A.Kishan MD / R.Cook MSPH / J.Ciezki MD
Los Angeles

QUESTION
Is there a difference in prostate cancer specific mortality and distant mestastasis associated with
1. Radical Prostatectomy (RP)
2. External beam Radiotherapy (EBRT)
3. EBRT with Hormone Theapy & Brachytherapy (EBRT+RT)

IMPORTANCE
The optimal treatment for Gleason score 9-10 is unknown

PARTICIIANTS
1809 patients treated between 2000 and 2013 in 12 cancer centres in USA (11) and Norway(1)

MEASURES
Primary outcome measure - PCancer specific mortality
Secondary outcome measure - distant metastasis survival

RESULTS

MORTALITY RATES
Adjusted Prostate Cancer specific mortality rates over time

Treatment. Mortality rate over 5yrs. Over 7.5yrs

RP. 12%. 17%
EBRT. 13%. 18%
EBRT+BT. 3%. 10%

INCIDENCE RATES OF DISTANT MESTASTASIS
Adjusted rates over 5years
RP. 24%
EBRT. 24%
EBRT + BT. 8%

CONCLUSIONS
Among patients with Gleason score 9-10 prostate cancer , treatment with EBRT+BT with hormone treatment therapy was associated with SIGNIFICANTLY BETTER prostate cancer-specific mortality and lower rates of distant metastasis when compared with EBRT alone or Radical Prostatectomy

As I say I'm not posting this to justify my decision or indeed belittle other treatments , it's just that it's NEW information and study results and may help others in making a massive decision on which there is not much comparison out there

My decision is based on
1. My cancer type and scoring
2. That the comparison study gives better chance of long life
3. That the comparison study gives less chance of returning
4. That EBRP+BT has less side effects

(As I'm 51 , being given a guarantee of impotency and incontinence on top of the other above possibly negative aspects of RP was a secondary benefit )

Many have told me that Brachytherapy has more chance of cancer returning that if the prostate is cut out

This study says that's not the case , in fact it's THREE times as much with Prostatectomy on Gleason 9-10 patients

If these results were used /treatments were horses in a race:

Brachytherapy has a 12.5/1 chance of cancer returning in 5years and a 33/1 chance of death in 5years
VERSUS
Prostatectomy has a 4/1 chance of cancer returning in 5years and a 12.5/1 chance of death in 5years

I know on these stats which horse my hard earned would be on in this race .....

Good luck to every prostate cancer brother ( and sister ) on this thread and I'll keep it going as to hopefully help others get a wider view of CHOICES .

After all that's all it is , as every case is different to the next and we are the ones left to make the call and THERE IS NO WRONG DECISION , it's YOUR gut feel and advice received that will make your mind

Best wishes to everyone posting for good health , fun and love
Much appreciated
Johnny

'Gotta get busy living , rather than getting busy dying'
Red

User

Posted 30 Mar 2018 at 19:13

Thxs Ann
Much appreciated for your kind wishes

I make multi million £ decisions every day and this has been my hardest by far

Hope your husband doing well
Best wishes
John

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User

Posted 24 Mar 2018 at 21:58

Hi Johnny, You haven't provided much information about staging, psa, scan results, breakdown of Gleason etc. My own theory as frequently said is that getting rid of the tumour by removal as soon as possible is the best policy. I'd think especially with a Gleason 9. Although at your age you might think alternative procedures will preserve continence and erection better and you might think those very important. For me they didn't even come into it compared with the risk of carrying a biggish lesion growing at a moderate pace said to be near the edge of the prostate.

It could be that your lesion is very small and that might take some urgency from it. Each case has these subtle differences.

There are people who won't agree with my simplistic opinion which is mainly derived from my own particular case and hopefully some other people will respond to your note.

All these things can cause mental stress that effects each of us differently and perhaps you'd like to expand on what worries you the most. People are very open about their condition.

Ultimately the decision is yours and we all have this choice to make. Although if a consultant is offering you surgery it's a good sign as that is the route closed off first.

Regards
Peter

Edited by member 24 Mar 2018 at 22:03 | Reason: Not specified

User

Posted 24 Mar 2018 at 22:45

You haven’t given us enough information but I am surprised you have found an oncologist willing to offer brachytherapy with a G9 - was it only one or 2 cores?

Proton beam therapy has not had good results as a primary treatment for prostate cancer although it has been successful as a salvage treatment and also for eye cancers and the treatment of very small children. If you are interested in proton beam, you will have to go overseas - Germany or Prague I think are nearest.

PS edited to say my husband was 50 at diagnosis and was refused brachytherapy for being too young - there are risks of other cancers years later - but I am aware that more hospitals are offering it to younger men now. The usual parameters are a) PSA less than 10 b) Gleason 7 or less c) prostate must be normal size d) no pre-existing urinary problems

Edited by member 24 Mar 2018 at 22:52 | Reason: Not specified

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

User

Posted 25 Mar 2018 at 00:10

Certainly, not enough information provided even for a professional, which we arn't, to provide an informed opinion. Sometimes, Brachytherapy, of both kinds, is supplemented by external beam. Was that offered?

Barry

User

Posted 25 Mar 2018 at 05:49

So, Johnny is yet another man who has had to have a template biopsy after an inaccurate TRUS biopsy.

And this from another website today: “My consultant in Glasgow did 2 trus biopsies but missed it both times. XXXXXXX got it with a guided biopsy. Much better experience.”

Just sayin’, as a “newbie”

Edited by member 25 Mar 2018 at 06:05 | Reason: Not specified

User

Posted 25 Mar 2018 at 09:05

Hi Johnny. It's a very very difficult decision to make but as Peter has said we all have to make it.( At least the menfolk do!) Do you have a partner? What do they think?

We are biased but went for surgery and fingers crossed it seems to have been successful.

In the NHS you should have a Multi Disciplinary Team who will give their recommendation. I don't know ( but may be wrong) of any other cancer where such a huge decision has to be made by the patient. It is good to be involved but most of us are not experts on medical matters so it behoves us to research and find out as much as we can before making the decision.

We thought it helpful to go on the YANA website where you can input your stats and a list of other similar stage men comes up. You can then compare what treatments they chose and how they have fared since over the years.

Good luck with whatever you choose

Ann

User

Posted 25 Mar 2018 at 09:24

You guys are great
Thanks so much for your replies

My scenario is that I'm a young 51 years old , play football three times a week as well as squash and golf . Ive absolutely no symptoms at all and was picked up on an annual private medical test with an initial PSA of 11.8.

This is key / fortuitous as the NHS as I understand don't do PSA tests as routine , only when symptoms are present

I insisted on an MRI first ( as is now practice this year ) to prove it wasn't a false positive and that something was there

This showed an anterior focus and a Trus biopsy wax arranged to scope that area a d Gleason 6 cancer confirmed

When I used my medical insurance to go private , the same NHS consultant recommended a Template biopsy ( which as your note says should have been done first ) then found
Gleason9 in two zones
Gleason 7 in two zones
Gleason 6 in three zones
So cancer in 7 out of 10 zones measured

Fortunately the direction is that my prostate is still small (23g) abs not enlarged , and cancer areas aren't near the exterior

My consultant , a surgeon, recommended a Prostatectomy , with the high risk / guarantee of incontinence and impotency
A small price to pay for the hope of longeivity

As I asked about other options , he put me in touch with a radiotherpaist in my home town of Nottingham , and his team Brachytherapist up in Leeds whom I met this last week

Both are convincing in that the longeivity success rate of brachytherapy is the same if not better than a Prostatectomy

The brachytherapy expert in Leeds presented a compelling report published in March 2018 that definitely breaks ground on which way is best for Gleason 9 & 10 cases .
It's the first ever wide ranging study ( others have only had 100's and pointed to brach being better but poo-pooed by surgeons as sample too small ) using thousands of prostate cancer cases where it equivocally points to brach (3% death within 5years ) versus Prostatectomy (13% death within 5years ) in Gleason 9/10 cases

My initial thought was G9 T1b (2) means gotta have it cut out

The surgeon has given no evidence it's the best way , but all the side effects , whilst the brachytherapy specialist points to the report that ' will rock the work and world of the surgeon'

I feel as if I'm between two salesmen selling different ways to do the job ( or between a lumberjack and a tree surgeon trying to sort an ailing tree in my garden )

Wondered if any of you had the same dilemma
Thxs
Johnny

User

Posted 25 Mar 2018 at 10:13

It is true, in my opinion, that surgeons always want to surge at you with a scalpel, or these days buddied up with their mate called Da Vinci and his laser, and that there is invariably pain involved.

But sometimes surgery is the best option, which is why I have chosen it.

Edited by member 25 Mar 2018 at 10:13 | Reason: Not specified

User

Posted 25 Mar 2018 at 10:30

Most men diagnosed with T1 or T2 here have had to make the same choice and for each person who tells you their decision was right you will have another telling you that in hindsight they would have done it differently.

Some of the stuff going on at Leeds is very exciting - the research team are involved in most of the PCa trials available - but you would have to consider the implications of travelling 1 1/2 hours for appointments and also check that your local NHS services would still be available to you. We have a member living in York who travelled to Leeds for treatment and has since been refused any kind of service in relation to incontinence, ED, follow up appointments - York CCG say it is not their responsibility because he opted for ‘out of area’

Can you clarify - why does the surgeon say incontinence and ED are guaranteed? Are they saying that it will not be nerve-sparing surgery?

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

User

Posted 25 Mar 2018 at 10:42

Originally Posted by: Online Community Member

This showed an anterior focus and a Trus biopsy was arranged to scope that area a d Gleason 6 cancer confirmed

When I used my medical insurance to go private , the same NHS consultant recommended a Template biopsy ( which as your note says should have been done first ) then found
Gleason9 in two zones
Gleason 7 in two zones
Gleason 6 in three zones
So cancer in 7 out of 10 zones measured

So it’s not about money then? “The same NHS consultant recommended a template biopsy” after an inaccurate TRUS biopsy, once he realised it could be paid for by private health care.

User

Posted 25 Mar 2018 at 10:42

Thanks Bollinge
Like your tact and wit !

Surgery still a live option for me

Just confused by both options evidence from the experts
They actively contradict (and actually berate ) each other to the patient as theirs being the better option , and even though they ARE multidisciplinary colleagues , there seems to be no 'judge' in this court of opinion to guide or direct you

Good luck with your treatment and thanks for your thoughts
J

User

Posted 25 Mar 2018 at 10:48

Thxs Barry Peter Lyn

Yes it's a three way procedure - HT ,HDR brachytherapy and external beam radiation

Appreciate your comments

Clear that the golden rule of managing prostate cancer is ....that are NO rules , limited good data , many options all similar with wide opportunity for success , failure and side effects

You's pays your money and it's only you's that makes the choice
Thxs
J

User

Posted 25 Mar 2018 at 10:52

User

Posted 25 Mar 2018 at 10:56

Hi Bollinge
You must be a Scots lad like me

In fairness - he was going to do the template on NHS but waiting list too long so did Trus ( obv no good to get the whole diagnosis ) instead . WAS going to do the template after on NHS which I had a date for , but chose to invoke private medical so could chose a more suitable date and time and hospital for me
Cheers
J

User

Posted 25 Mar 2018 at 10:58

Ann
Just checking out the YANA website !! Very useful
Thxs
John

User

Posted 25 Mar 2018 at 11:04

Lyn
Thanks for that
Distance not too bad as my mum lives in ripon nearby and as I'm invoking medical insurance I've got that support

I love the NHS ( best thing about this country in my view ) s d I've always used but the time allocated is helpful

The surgeon couldn't guarantee / almost definitely can't save nerves , hence the prognosis

It's not the aspect that will make the decision but it's a factor for sure

Thxs again
John

User

Posted 25 Mar 2018 at 12:03

Ah okay - double check then. If you have the treatment privately, you will not have access to a clinical nurse specialist and may have to fight for referral to ED and incontinence services (all of which will be Notts responsibility). We only realised all that when it was too late.

If you go ahead with brachytherapy, I think you will be under the same onco as us. Brilliant man.

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

User

Posted 25 Mar 2018 at 13:08

Originally Posted by: Online Community Member

The brachytherapy expert in Leeds presented a compelling report published in March 2018 that definitely breaks ground on which way is best for Gleason 9 & 10 cases .
It's the first ever wide ranging study ( others have only had 100's and pointed to brach being better but poo-pooed by surgeons as sample too small ) using thousands of prostate cancer cases where it equivocally points to brach (3% death within 5years ) versus Prostatectomy (13% death within 5years ) in Gleason 9/10 cases

The surgeon has given no evidence it's the best way , but all the side effects , whilst the brachytherapy specialist points to the report that ' will rock the work and world of the surgeon'. "

You do have to bear in mind that most surgeons would not operate on Gleason 9 or 10 cases because their PCa has a higher risk in having already spread outside the prostate. They would only choose to operate in cases like yours after careful consideration where the cancer seems contained. ( Never any guarantees of course) I wonder whether the study ( in the Prostatectomy camp) just included the "favourable " cases or everyone who wanted surgery whether they were a good candidate or not.
Researchers can be biased towards showing their own preferred treatment in the best light.

Regards
Ann

Edited by member 25 Mar 2018 at 13:09 | Reason: Not specified

User

Posted 25 Mar 2018 at 13:51

Originally Posted by: Online Community Member

Hi Bollinge
You must be a Scots lad like me

No, Johnny, I am Coventry born and bred - but not dead - yet!
Cheers, John.

Edited by member 25 Mar 2018 at 13:53 | Reason: Not specified

User

Posted 26 Mar 2018 at 02:39

Well hopefully the MRI and Template biopsy correctly signified to consultant that the Cancer was contained and in reality it is. Should this be the case there is a very good chance that surgery would provide a successful outcome.

There have been great improvements in the way RT is delivered and results with Brachytherapy, especially augmented by External Beam give very good results which compare well with surgery. However, there remains a concern that RT may induce another cancer even many years later. Also, whilst there is still a Prostate, albeit a radiated one, there is a possibility for a new tumour or one that was not completely dealt with becoming a problem - happened to me!

There are all sorts of statistics comparing success of various treatments which come up with differing figures of success. These are all well retrospective and treatments have moved on, just one reason to partly explain discrepancies. Another, is the timescale, 5 years is quite inadequate and it is likely that there would not be a great difference in mortality over this period from d for men that had treatment of any type and those who had none in terms of PCa if it was diagnosed at a fairly early stage. What is needed is more accurate long term comparison of results, say for 15 years but as stated individual and multiple treatments will have moved on.

It makes it very difficult for a man to decide what is best for him.

Barry

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