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Prostate treatment options

User
Posted 28 Nov 2016 at 21:05
Diagnosis: localized carcinoma of prostrate - October 2016. 3/8 affected .Gleason 3+4 (50%)2/3core, 3+4(30%)2/4core, 3+3(<5%)1/6core.DRE clear. MRI No extra-capsular disease, no evidence of lymphadenopathy. PSA 6.3

Medical history : Myocardial infract -16 years ago . One coronary artery sent and since then no issues. Check up with cardiologist regularly.

Erectile dysfunction - 4 1/2 years ago . Pills worked till this year. Injection recommended - (Edex) tried once and worked in physicians office but painful.

Two Prostate treatment options discussed:

1-Hormone therapy (likely bicalutamide 150mg once a day tablet, ) for 3months , then implantation of fiducial markers,MRI and CT scan to design treatment thenCyberKnife radiation for 5 days.

2- Robotic radical prostatectomy

Discussed with the two specialists and I seem to prefer the no 1 option. Was told that the two options are good for my case. I already have one of the potential side effects and do not want to complicate things further.

Any ideas or comments please to help make up my mind so I can start treatment later next month?

Thanks

User
Posted 28 Nov 2016 at 21:05
Diagnosis: localized carcinoma of prostrate - October 2016. 3/8 affected .Gleason 3+4 (50%)2/3core, 3+4(30%)2/4core, 3+3(<5%)1/6core.DRE clear. MRI No extra-capsular disease, no evidence of lymphadenopathy. PSA 6.3

Medical history : Myocardial infract -16 years ago . One coronary artery sent and since then no issues. Check up with cardiologist regularly.

Erectile dysfunction - 4 1/2 years ago . Pills worked till this year. Injection recommended - (Edex) tried once and worked in physicians office but painful.

Two Prostate treatment options discussed:

1-Hormone therapy (likely bicalutamide 150mg once a day tablet, ) for 3months , then implantation of fiducial markers,MRI and CT scan to design treatment thenCyberKnife radiation for 5 days.

2- Robotic radical prostatectomy

Discussed with the two specialists and I seem to prefer the no 1 option. Was told that the two options are good for my case. I already have one of the potential side effects and do not want to complicate things further.

Any ideas or comments please to help make up my mind so I can start treatment later next month?

Thanks

User
Posted 30 Nov 2016 at 18:02

Bui

Sorry to hear your news.  I had a similar score from my Biopsy in September (3+4 T2c).  Speaking to both my surgeon and oncologist I was offered two treatments - Radical Prostatectomy or Brachytherapy.  I discussed active monitoring, however, neither doctor believed this was a possibility.

The trouble there are no definitive answers and everyone has different perspectives on what important for them and what is less so. However, when doing "research" (mainly this website, doctors and materials from Guys/London Bridge Hospital) I found it helpful to breakdown the treatment differences into four categories:

1) Chance of Success - How successful is the treatment, and are there salvage options should the treatment not be successful

2) Short-term impact - What would the aftermath of the treatment be like in the first two months? inc amount of time off-work

3) Medium-term impact - What are the side effects from two to nine months?

4) Long-term impact - Are there any long term side effects?

Point 1 was the most important and would have been a "deal-breaker" if there were material differences.

For short and medium term impact I also considered the treatments available to deal with these.  And I validated my "research" with the doctors and nurses, asking each the same questions to see if I got consistent answers.  I also spent a lot of time getting my wife's view on dealing with the treatments and articulating pros/cons to her.

This may not be perfect and but I was able to rationalize what was happening and come to a decision on treatment which I am comfortable with.

Good luck

C

User
Posted 01 Dec 2016 at 23:03

The most important side effect of treatment is life :-)

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

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User
Posted 29 Nov 2016 at 08:39

Hello Bui and welcome.

Can't help with your query but bumping your post as it was disappearing down the list. Hopefully somebody with the knowledge need will be along to advise you

***

We can't control the winds - but we can adjust our sails
User
Posted 29 Nov 2016 at 09:05

Hello Bui,

Sorry to see you here but you are most welcome.

Only you can decide which way to go, with the advice of your medical team.

Remember this is about saving your life and that was always my priority.

ED will be affected whatever treatment you have, but is pretty much guaranteed at least in the short term with the surgery.

You could argue that ED is already a problem so you wont loose too much, but you will not gain.

The other   question is "are you fit enough for surgery, only your medical team can answer that.

From what I have read both methods should be similar in sorting out the cancer.

I am having surgery on the 1st, my decision was based on a very strong genetic influence and thus the need to remove healthy prostate along with the cancer.

I hope this helps

Good luck.

Nigel

User
Posted 29 Nov 2016 at 11:58
The specialist on radiation I spoke with rated surgery first for me as an option. This is because she said it is the gold standard and I do not seem to have any issues outside the prostate. She also confirmed that the first option will also be very okay for me. Some other people I spoke with suggested the surgery which I am now seriously considering. Still doing a lot of reading and will talk with people who have gone through this. I am 61 years old now and surgery should not be a problem.

Some other people told me to look into Proton beam radiation and radiation seed implatation( brachytherapy). I guess if you have choices it brings some confusion.

Hope to make up my mind soon

User
Posted 29 Nov 2016 at 12:23

Hi Bui,
My preference would have been for surgery even without the genetic influence, as the results of the surgery are quickly known and easily followed by the PSA test. A quick removal of hopefully all the cancer appeals to me, and the short term trauma seems a worthwhile consequence.
However two medical consultants (mid fifties) that I know both went for brachytherapy as they felt this was the easiest option.
Another friend went for external beam RT, it worked very well for him, he was in his early seventies at the time.
I did look at proton therapy. In theory it should be easier to deliver the energy in the prostate. But from what I have read in practice it is similar in outcome to standard external beam RT that uses Xrays, and is a lot cheaper.
I don't think the proton therapy is available in the UK.

Also some surgeons (most) will not operate after radio therapy if it not 100% successful. But you can (and many do) have RT after surgery.


All the best
Good luck.
Nigel

Edited by member 29 Nov 2016 at 12:33  | Reason: Not specified

User
Posted 29 Nov 2016 at 17:14
Hi Nigel

Wishing you the best on the 1st

PCa history in my family I know is my dad. Died aged 86+ and his PCa was left untreated until it was too late.

I am therefore trying to ensure I get rid of everything relating to PCa in my body . Like you wrote a few weeks of inconveniences should not let you do what you have to do.

Weighing my best options for treatment and pray it will be the right one for eventual total cure - very open to all possibilities now

All the best

User
Posted 29 Nov 2016 at 17:15

Hi Bui I went down the RP route as I wanted the option of RT after as a second chance as RP is rarely done after RT all the best with your decision Andy

User
Posted 29 Nov 2016 at 18:33
Hello Bui,

I went down the RP 12 months ago thinking that's the end of it, low and behold I start RT soon for 30 weeks, not out of the woods yet.

Good Luck

James

User
Posted 29 Nov 2016 at 20:21

30 weeks???????

Bui, 80% of men in their 80s have prostate cancer so dad's diagnosis does not necessarily mean that there is a genetic link between your cancer and his. If you have any close female family members that have had breast cancer, that could be a link.

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

User
Posted 29 Nov 2016 at 20:56
I guess the treatment option chosen based on the initial PCa diagnosis affects the result. That is why one prays that the initial diagnosis is accurate and the physician is well experienced to handle the particular case.

There is the feeling of urgency to do something after the diagnosis but if it is not a critical case I guess one should give some time to research/ talk about all options. I was diagnosed late October and I am already feeling now I should start my chosen treatment within the next couple of weeks. Tough to make a decision on treatment options that you hope is the lasting cure!

User
Posted 30 Nov 2016 at 07:43
If one wants to be treated by radiation there is the long term risk effect of other radiation induced cancers. Is there any way this is minimized? What are the chances of this occurring?

Looks like with surgery ER and incontinence are regular side effects that affect quality of life. For me since I already have ER managed by injection I do not know if it will get worse - then what? With incontinence one might not know how long it will last.

Tough!!

User
Posted 30 Nov 2016 at 17:30
The reason why this forum is invaluable is that you get direct comments from people who have experienced various treatment options. Great resource for someone who is "confused" in the process of trying to make a life decision!

I have only been using this type of forum for travel / vacation advice but now see the importance especially for this "tough" process of making a decision. The travel / vacation advice is child's play.

Appreciate the replies more than I can pen down here ! Helping with my decision process and questions to ask my physicians / specialists as I meet them again next week.

User
Posted 30 Nov 2016 at 18:02

Bui

Sorry to hear your news.  I had a similar score from my Biopsy in September (3+4 T2c).  Speaking to both my surgeon and oncologist I was offered two treatments - Radical Prostatectomy or Brachytherapy.  I discussed active monitoring, however, neither doctor believed this was a possibility.

The trouble there are no definitive answers and everyone has different perspectives on what important for them and what is less so. However, when doing "research" (mainly this website, doctors and materials from Guys/London Bridge Hospital) I found it helpful to breakdown the treatment differences into four categories:

1) Chance of Success - How successful is the treatment, and are there salvage options should the treatment not be successful

2) Short-term impact - What would the aftermath of the treatment be like in the first two months? inc amount of time off-work

3) Medium-term impact - What are the side effects from two to nine months?

4) Long-term impact - Are there any long term side effects?

Point 1 was the most important and would have been a "deal-breaker" if there were material differences.

For short and medium term impact I also considered the treatments available to deal with these.  And I validated my "research" with the doctors and nurses, asking each the same questions to see if I got consistent answers.  I also spent a lot of time getting my wife's view on dealing with the treatments and articulating pros/cons to her.

This may not be perfect and but I was able to rationalize what was happening and come to a decision on treatment which I am comfortable with.

Good luck

C

User
Posted 30 Nov 2016 at 18:48
Originally Posted by: Online Community Member
If one wants to be treated by radiation there is the long term risk effect of other radiation induced cancers. Is there any way this is minimized? What are the chances of this occurring?

Looks like with surgery ER and incontinence are regular side effects that affect quality of life. For me since I already have ER managed by injection I do not know if it will get worse - then what? With incontinence one might not know how long it will last.

Tough!!

It seemed the NHS fully accepted the research that pelvic radiotherapy in all its forms increases the risk of bowel and bladder cancer - I think the statistic was an increased risk x4 but since the risk for someone that hasn't had RT is something like .5% the chance of a man with prostate cancer getting later bowel/bladder cancer is 2% and the optimum time is 10-15 years after treatment. So the risk is still very very small ... the risk of dying from PCa is much greater than the risk of having successful treatment, recovering and then dying of bowel cancer. However, our hospital will not do brachytherapy on young men because they believe there is more chance of them living long enough to develop a second primary cancer (John was 50 when he was refused)

It also has to be said that all reliable research in this field is looking at 10 year data or longer but the fact is that RT now is much safer than it was 10 or 15 or 20 years ago. Most men now have IMRT rather than plain EBRT so the scattergun approach of years gone by is less common. Just my view but my guess would be that the data on second primary cancers 10 years from now will be very different to the data published 5 years ago.

Edited by member 30 Nov 2016 at 18:52  | Reason: Not specified

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

User
Posted 01 Dec 2016 at 22:50
Communicated with the surgeon today about possible dates and my issues about side effects

Responded about possible dates next month but silent on issues I noted about possible side effects of surgery

Guess I have to keep on pressing with issues especially side effects with specialists for each treatment option?

User
Posted 01 Dec 2016 at 23:03

The most important side effect of treatment is life :-)

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

User
Posted 03 Dec 2016 at 13:14
Does anybody have any experience / comments if you start on Hormone therapy in form of bicalutamide 150mg once a day ( e.g casodex ) .

This is meant for 3 months in preparation for CyberKnife radiation.

After 1 month of hormone therapy if one now decides that it is surgery you would want to have - any complications/ problems with this change of decision?

At the initial stage you have been told that either radiation or surgery will be good for your case.

Asking this question because the casodex is supposed to prevent the situation from getting worse ( buying more time ) before you get the treatment- any I guess any treatment

User
Posted 03 Dec 2016 at 13:49

Bicalutimide does not affect the production of testosterone and should therefore not make a huge difference to the prostate gland's 'solidness' in the space of 3 months. Generally, the problem is where treatment has made the gland mushy so they cannot remove it cleanly because it falls apart and bits get left behind. Give your nurse specialist a ring and ask the question?

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

User
Posted 03 Dec 2016 at 18:29

Hi Bui

My diagnosis is similar with Gleason 3+4. As you already know, there are great resources here with other men going through exactly what you are right now, and lots who have been through it and out the other side.

I didn't want to choose any radical treatment, and would have been happier with AS. But as a healthy 61 I decided that the operation was the best route to hopefully get rid of the PCa, and I would roll the dice on side-effects. The one thing that did it for me was when I met the surgeon. He answered all my questions and he gave me great confidence in him and the operation. I was concerned by your comment that your surgeon didn't make fully address all your concerns. This is a tough decision for all of us and you should have confidence in your surgeon. My local hospital also offered an afternoon session to go over all the pre-op and post-op details, which was also very helpful. They are available for those considering the operation, so do ask if that is available in your area.

I'm delaying my operation until March because we have a holiday booked in February and both my oncologist and surgeon had no problem with that. I'm just mentioning it re: you perhaps wanting to give yourself more time to consider what is right for you. I know from reading many of the posts that a lot of men just want to get it out as quickly as possible. That is for each person to decide, but with your diagnosis, a few weeks delay is unlikely to be a problem. As always, speak to your nurse specialist, oncologist, etc about it first.

Good luck with your decision-making and keep asking questions.

Chris

User
Posted 03 Dec 2016 at 22:35

Thanks for the comments

I am presently out of the U.K. returning this Monday.

I guess why the specialists have not been responding fully to my questions is that the last two weeks I have been out of the country and asking them questions by mail.

They obviously do not want to write the comments down for reasons I can understand.

I am seeing them again this coming week with a lot more questions - quiet a bit got from this forum and the research I have been doing.

The objective in the end is to make an informed decision that I will be comfortable with and will cure my ailment .

I have repeatedly been told now that when you have choices it can cause some confusion but I need to stay focused .

User
Posted 04 Dec 2016 at 02:07

Bul
Consultants can tell you what the success rates of treatments are taken over a large number of cases as well as percentages of men who have various side effects, although you can research this yourself. I am not surprised that you have been unable to obtain an answer for your specific situation as this can't be predicted with great accuracy for an individual patient in advance. For example, it very rarely happens that a man undergoing a prostatectomy will become permanently incontinent following surgery but we had a member so affected on this forum awhile ago and his surgeon was reputed to be one of the leading handful of surgeons in the UK. It may be the surgeon made a mistake or the cancer was more extensive than thought before he was opened up or for some other reason. Thankfully, most men become continent sooner or later after the op.

Just another consideration for you, Cyberknife radiation which you are considering is relatively new, so no long term statistics to compare it with EBRT or brachytherapy come to that, so more unknown possibilities.

You will have to reconcile yourself to the thought that you will not know in advance of treatment how it will affect you afterwards.

Barry
User
Posted 04 Dec 2016 at 21:17
Can one use SpaceOAR for all types of radiation including CyberKnife?

Has anybody used it and can comment on it?

Is it worth insisting that it is used if you go the radiation way to minimize the risk of secondary radiation side effects?

User
Posted 04 Dec 2016 at 23:20

Never heard of anyone on this forum having it and it seems to me that you are googling so widely that you may be in danger of picking up and being impressed by wizards and magic potions. Most people's bowels are fine after RT. Talk to your specialists rather than Dr Google perhaps?

http://community.prostatecanceruk.org/posts/t11205-Gel-and-balloon#post137740

Edited by member 04 Dec 2016 at 23:36  | Reason: Not specified

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

User
Posted 05 Dec 2016 at 12:42
Back in the U.K. now

Have meetings with my urologist and oncologist ( radiation) this week- different days

Will probably also see the surgeon another day

Summarising questions to ask as I meet them- have much better picture now than when I started

Have gathered quiet a bit from this forum

Thanks

User
Posted 08 Dec 2016 at 08:37
Have the option of getting treatment in the U.K. or the U.S.A.

Does the location make a difference?

Are more cases treated in the U.S.A and do you have more treatment options ?

General feeling is that the equipment might be the same and the experience of the physician / hospital staff is what matters

User
Posted 08 Dec 2016 at 11:31

As in the the UK some surgeons will be more highly regarded than others. Just because there are more men affected in total in the USA does not make surgeons more experienced, only that there will be more surgeons in the USA. The experience is limited to how many men a surgeon is able to operate on in a day which is likely to be two in either country. The techniques would be basically the same, although fewer hospitals have robotic surgery in the UK.

As far as radiation goes, there would be more choice in the USA because they additionally treat with Proton Beam for those that are suitable. Theoretically, Proton treatment should be superior to Photon because the energy is mainly released on the tumour and a much lower amount on it's way to and after the target as with Photon RT,(the so called Bragg Peak), so less collateral damage and the tumour is hit harder. This has proved to be very much the case with head tumours and indeed people are sometimes sent from the UK to the USA for this reason, the USA having the most Proton Beam facilities and the longest experience of this type of treatment. There are many patients and doctors in the USA who advocate this treatment for PCa also but there is a surprising lack of comparative data between this and other forms of RT. The advantage of using Proton beam to treat PCa over other forms of RT is less well defined. I did consider this back in 2008 when I was looking into other treatments but ruled it out on the grounds of cost, about three months overall in the States and check ups over there. I believe the number of fractions has now been reduced, so this would have an effect on time and cost.

The other forms of Photon RT available in the States are also available in the UK but not necessarily all at any one hospital.

Edited by member 08 Dec 2016 at 11:45  | Reason: Not specified

Barry
User
Posted 08 Dec 2016 at 11:42

I would want to know, if the treatment is done in the USA will you still be able to access free ED / incontinence services from your local NHS if needed? In some CCG areas, if you didn't have the treatment on the NHS then you cannot get a referral for NHS aftercare.

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

User
Posted 08 Dec 2016 at 11:58

Lyn is right about this and it is certainly an aspect that should be established in advance. I was fortunate in that having decided to have my RT within a study in Germany, with EBRT supplemented by Carbon ions (which have an even higher RBE than Protons), the Royal Marsden agreed to monitor me and in due course referred me to UCLH for further treatment. So in my case I was able to get back into the NHS system and just as well!

Barry
User
Posted 08 Dec 2016 at 12:59
Would be using private insurance that covers follow up treatment. Will find out from them if it covers having treatment in one location and follow up in another location.

On another note I do not think Proton therapy is popular in the U.K as in the U.S.

User
Posted 08 Dec 2016 at 15:54

The point is that there is no private equivalent to your NHS ED nurse / andrology clinic which means you would be dependent on either your private urologist or the relevant private hospital to be knowledgeable and up to date with current research etc and to write all prescriptions for pumps, pads, caverject (if needed) as the GP is unlikely to prescribe on a private consultant's say-so when it is going to come out of the GP's budget.

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

User
Posted 08 Dec 2016 at 16:55

Proton therapy is not so popular in the UK because apart from the low powered unit at Clatterbridge, which only has sufficient oomph to treat eyes, there are to the best of my knowledge no Proton Beam facilities in the UK as yet, although there is one planned for UCLH in London and another at theThe Christie in Manchester. These have been subject to delay, largely due to Government policy and it is unlikely when completed that these will treat for Prostate cancer when there are other cancers that can be better treated as a priority. You may recall the case of Ashya King who had Proton Beam treatment in Prague. http://www.bbc.co.uk/news/uk-england-32013634
So if patients or their insurers are prepared to pay, the centre in Prague or Germany amongst others in Europe are alternatives to going to the USA.

The most import factor determining how successful a treatment will be, (accepting that it will be competently administered), is the type of PCa a patient has and how extensive it is. Of course the skill of a surgeon or radiologist and how advanced the equipment is is important and patients may be more suitable for one or more forms of treatment.

Barry
User
Posted 09 Dec 2016 at 16:38
Just had a discussion with an oncologist -radiologist - today

For my case she does not encourage Proton beam radiation -still trial and experimental

Brachytherapy -botherline- be ready for some immediate side effects

CyberKnife - first choice -tested and proven -will use SpaceOAR to minimize radiation to other organs-urine flow result excellent-will use bicalutamide to lower PSA for first three months -use markers-do MRI& CT scan and then 5days radiation. Side effects will be minimized e.g urinary urgency . Rectal and urinary side effects minimized.

She is confident if I want to go the radiation way this is the way to go.

Laser ablation - can be use as a salvage option if there are issues with radiation

Said no matter the treatment I choose -even surgery -ED will be worse

User
Posted 09 Dec 2016 at 19:06

That's good news - did she say whether they could give you tablets or perhaps a bit of radiotherapy to the breast buds before the bicalutimide starts, to reduce the risk & pain of breasts?

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

User
Posted 09 Dec 2016 at 20:26

Always good to get an opinion on what treatment is considered best suited to you as an individual, as a standard approach may not be best for all patients. Also, regardless of how it all pans out, you can know you got advice from consultants familiar with your case and considered this as part of your decision, so in a sense some satisfaction in knowing you did all you could to get a good result in a situation where there are no certainties.

Barry
User
Posted 09 Dec 2016 at 22:50
LynEyre

She actually addressed the bicalutimide effect on the breast - she said it can start having effect on the breast if taken for some time but 3 months should be fine

User
Posted 09 Dec 2016 at 23:18

For John the pain started almost immediately and the moobs were obvious by 3 months. Unfortunately it is often a permanent side effect and it has taken him almost 5 years to get rid of them.

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

User
Posted 19 Jan 2017 at 00:09
Decided to go with CyberKife treatment after visiting U.K. And U.S. Hospitals/ consultants.

Started Bicalutamide (150mg/day) on 25th December , 2016.

Will take it for 3months then the treatment.

So far no noticeable side effect on the Bicalutamide - almost one month.

Hoping the CyberKnife treatment too goes with minimal side effect.

Will use fiducial markers, Gel., for the treatment.

Will keep you updated !

User
Posted 26 Feb 2017 at 10:58
Two months now on Bicalutamide ( 150mg)- one month to go before treatment with markers / gel and CyberKnife radiation.

Noticed mild tiredness. Breast tenderness / enlargement also very mild. No other noticeable side effect .

Discussed this last week at visit to doctor - no need for extra medication since it is very mild and not bothering me.

Expecting advice / information from dietician team and physiotherapist to help with treatment.

PSA 5.9 two months ago now 3.45 last week.

User
Posted 28 Feb 2017 at 00:30

Good drop on the PSA front, interesting that you are to see a physio ... did they say why?

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

User
Posted 26 Mar 2017 at 16:10
Three months now on Bicalutamide ( 150mg). To stop after CyberKnife treatment.

Placement of fiducial markers / spacer OAR this coming Monday and CyberKnife radiation about 1/2 weeks after.

tiredness, Breast tenderness / enlargement mild. No other noticeable side effect.

PSA 5.9 three months ago ,3.45 a month ago now 3.06.

Postrate volume - 53 ml after biopsy last November now 30 ml this week.

User
Posted 06 Jul 2017 at 22:48

First three months follow up today after CyberKnife treatment

PSA 1.79 today from 3.06 three months ago

Urinary urgency still present sometimes but significantly reduced .

Urinary rate flow significantly improved. Did not need flowmax after CyberKnife

Mild breast enlargement from hormone treatment still present

Told that these will gradually get back to normal but even now they are not problems.

No other side effect noticed .

Next PSA check in three months. Hoping and praying for permanent very low PSA.

Will follow up with urologist on ED. Need one that is not painful and can be transported with minimal ceremony.

 
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