Decisions Decisions for best treament

User

Posted 07 Oct 2018 at 11:36

Heizenburg here,

firstly, I have posted this same message on the Macmilan site - so apologies if you have read it alreadu

I was diagnosed with prostate cancer 2 x months ago. I suppose I am 'intermediate' with a Gleeson score of 7 (3/4)

My PSA was 10 ... 6 x months ago, now 13.4. My MRI scan showed the cancer to be encapsulated in the prostate.

Based on this information, it is now for me to decide which treatment to take - surgery - it would be the robotic method, or radiation - probably external beam radiotherapy.

But how to decide which treatment to take? Both, as I understand, are equally effective in removing the cancer, and preventing a return. There are some differences in the side effects- temporary and permanent, but they must vary considerably from person to person.

I was expecting a treatment to be recommended by the specialist/ consultant, based on my specific condition, but it appears that with 2 x comparable treatments available to me, the decision is mine.

I have met or spoken with 2 x ex 'surgery' patients, and 1 x ex 'EBR' patient, and they have all been happy with their respective treatments. All were recommended a certain path though, for different reasons.

Can anybody give some advice on how to make this decision?

Possible factors are:

Other medical conditions prevent surgery being an option

Age - It seems that older men tend to opt for RT over surgery. I am 67 so not sure how I fit in there.

Personal circumstances. I am married. Work full time. Have my teenage son living with us. I lead a pretty active life.

Any guidance would be appreciated

Thanks,

Ian

User

Posted 07 Oct 2018 at 12:39

Hi Ian, it seems like you already have the situation under control. You are in a very similar position to me, and have the same choices I had.

For me, the deciding factor was "what's the worst that can happen?" being incontinent either temporarily or permanently would be a disaster. Surgery has a higher risk, it didn't matter by how much, it would be unacceptable (FOR Me)

I didn't fancy any more surgery either, so radiotherapy it was for me.

But your hang ups will be different for me. You can be pretty certain that you would not be offered options which don't have an equal chance of success, so you might judge it on side effects and potential consequences.

Good luck with your choice.

User

Posted 07 Oct 2018 at 17:03

Thank Tykey,

next step for me is to get a meeting with both a radiotherapist and a surgeon and get as much detail on the treatment / the operation - specific to me, as possible.

Trouble is, you will never know how you as an individual will react to the treatment / the operation in the short and long term.

Somebody did suggest tossing a coin.....

Good luck with your treatment,

Ian

User

Posted 07 Oct 2018 at 17:56

That's true! You just make a decision on what you know, and stick with it. But the good news is that either decision is likely to result in success.

User

Posted 07 Oct 2018 at 17:57

Hi H,

What kind of biopsy did you have?

Cheers, John.

User

Posted 07 Oct 2018 at 20:10

If the cancer is thought to be contained younger men more often have surgery whilst older men have RT. The thinking is that younger men have longer than older men for their cancer to develop over the years. With the RT option there is greater risk of the tumour regenerating in years to come and also the risk in the long term, maybe 20 or so years of the radiation initiating other cancers. This is less likely to be a problem for older men who would expect fewer years. Also surgery can be more traumatic for order men. This may help explain the prevalence of type of treatment to age. You are more in the middle where the balance between the treatments is more similar numerically.

Regardless of what you know about PCa, it is still a difficult decision to make but it might help you if you download the 'Toolkit' or obtain a hard copy of it from the publications department of this charity.

I think Brachytherapy is becoming a well regarded form of RT and for suitable men the results seem better at destroying cancer than just External Beam. However, there are two kinds of Brachytherapy and where considered appropriate either can be supplemented by External Beam with good effect - this is a generalized observation if you are looking at RT and not a recommendation. The treatment decision where there is a choice has to be yours; much depends on the variables and how you regard risk.

Edited by member 07 Oct 2018 at 20:14 | Reason: Not specified

Barry

User

Posted 08 Oct 2018 at 19:28

Hello John,

not sure the biopsy had a name, but the method was pretty straightforward. Probe up the back passage, and then 10 x samples taken on each side by firing needs from the probe. Not a pleasant experience.

This gave me the Gleeson result of 3/4 = 7. MRI scan last month showed cancer contained in prostate. Hoping it stays there,

Cheers,

Ian

User

Posted 08 Oct 2018 at 19:42

Thanks Barry,

that all made sense. Edging towards surgery at this time, but plan to meet both a surgeon and an oncologist shortly to talk through what exactly their treatment would entail.

However, there appears to be another potential or even probable side effect with surgery - penis shortening. Apparently, the urethra is cut from the bladder at the start of the procedure and then tied back up at the end - the result is that the old fellow is pulled back in. This would be OK if I had a big one to start with! Will need to bring this one up with the surgeon.

Cheers,

Ian

User

Posted 08 Oct 2018 at 19:58

Be aware that radiotherapy will also cause penile shrinkage, especially if it is partnered with hormone treatment. And it isn't just shortening; girth is also usually affected with both treatments.

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

User

Posted 08 Oct 2018 at 20:49

Hi Ian, I had a similar condition, same age, 2 years ago. I was keen on surgery for the speed of getting treatment and only 2 days in hospital. Although I wavered at worry about the op. The rational answer was going to sleep for 3hrs and waking up with no prostate. There is then about a month of healing with probably another month of stomach muscular recovery and it took a total of 5 months to get 99% continent and 2 years later I'm only just getting sexual full function. We're all different. It was no major inconvenience, I went on holiday for a month 8 weeks after the op.

Yes older men don't get offered surgery as it takes some strain being sloped at about 30degrees downwards. Also if you're too heavy you won't be offered surgery unless you can lose a lot fast.

I wouldn't delay too much and try to decide what you want at an appointment rather than going away and thinking about it. If an op you might want to get it in well before Christmas. My op was a week before Christmas, I was very keen.

Regards

Peter

User

Posted 08 Oct 2018 at 21:46

Just adding a note that only men having keyhole / robotic RP are tipped head down. Men having open surgery stay on their backs :-) Being tipped up tends to only rule out men with heart problems. Previous abdominal surgery can be a problem for keyhole RP but it depends where the scar tissue is; my husband had scar tissue from an appendectomy so was advised to have open RP (there were a couple of other reasons that he chose open, though) and sometimes men that have mesh implants for a hernia cannot have the laparoscopic/ robotic RP.

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

User

Posted 09 Oct 2018 at 07:48

Lyn,

you have made a bleak situation even bleaker. Still, it is better to be aware of all these facts. Is this the same for Robotic surgery and open surgery - the latter of which I thought caused more damage.

Did not know about the reclined position either - so for robotic, your are lying on your back with your head lower than your feet - at a 30 degree angle! what is the purpose of this?

I have booked myself in for surgery - probably December before I get a slot. Thought I would understand more about both surgery and RT while I wait. Not sure if I am getting much comfort from the process though.

As for Kierkergaard, well if I do meet him in another life, I can tell him which direction to go!

Cheers,

Ian

User

Posted 09 Oct 2018 at 07:55

Barry,

as a matter of interest, what treatment are you planning, or have done already? and what pushed you in that direction?

I may have seen another post of yours somewhere - what age are you? personal circumstances...?

From the photo you look in pretty good shape- - not sure what you are doing / what you are wearing, but if it is in the privacy of your own garden ... who cares!

Do you agree with the posts that Lyn has made - based on personal experience?

Cheers,

Ian

User

Posted 09 Oct 2018 at 08:11

Hello Peter,

thanks for responding. I have in fact put my name down for surgery last week - but will up to 2 x months as there is a waiting list. It will be the robotic method, which has been used here (Aberdeen) for some time now

In the meantime I am doing more research, and posts from people like yourself are very educational.

I have not ruled out RT treatment, but have yet to be convinced that it is the best for me.

Now I am hearing some uncomfortable facts about the surgery. Tipped up during the operation, incontinence, penis shrinkage, ED for a fairly long period etc...not good to hear. If it is not too personal a question - did / does PS affect you?

Still, your experience has given me some optimism - I have also met two ex patients locally who had surgery, and were happy to go that way.

Best regards,

Ian

User

Posted 09 Oct 2018 at 10:17

Ian, don't delve too deeply at this stage, and don't try to come to a decision. You will find your mind will become clearer after your discussions with the consultants, they will probably answer some questions you haven't even thought of yet.

You won't need to make a decision on that day, either. They will expect you to leave them and take time to mull it over. And let them know in due course.

Just take a list of your concerns with you.

User

Posted 09 Oct 2018 at 11:14

If you click on each person's online name, it brings up their profile so that you can read about their diagnosis, treatments had, etc.

Don't assume robotic RP is better than open surgery; they are just different. Open surgery has slightly better outcomes in terms of continence, erectile function and negative margins, and slightly less chance of recurrence. Robotic is more convenient because it requires less time in hospital and post-op recovery tends to be quicker so less time off work.

Edited by member 09 Oct 2018 at 11:42 | Reason: Not specified

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

User

Posted 10 Oct 2018 at 07:56

Lyn,

you seem to be very knowledgeable in these matters. Can you explain how HT and RT treatment causes this physical 'reduction' to take place?

I am starting to think that a complete sex change operation might be an easier option!

As regards your post on the different types of surgery, I take your point that you are out of the hospital / back to work quicker, but my understanding is that it is more accurate- the work is magnetised., and the surgeons do not get fatigued as there are sitting down.

I would have expected these factors to all contribute to an improved outcome.

Cheers,

Ian

User

Posted 10 Oct 2018 at 08:00

Tykey, yes, good advice. I feel I am getting pulled in all directions just now. I need to back off a bit. Hope to meet with specialists this week

Thanks,

Ian

User

Posted 10 Oct 2018 at 08:20

Hello again Peter,

I was heartened by the progress report that you have in your profile. If I can emulate that I will be very happy.

What I noticed also was the fairly quick progress you made through the various tests. In comparison I have been on a slow 'process'

My initial PSA test was in March - 9.9 (need to confirm exact date)

Waiting one month for a second PSA test - which confirmed it was high - 10.1.

Then waited at least 10 x weeks for the Biopsy - in mid July.

Met specialist and was given the news on 3rd August - Gleeson of 3/4 T2C.

Had MRI scan ~6 x weeks after biopsy (as standard to allow prostate to settle after biopsy) on 4th September.

Received results of MRI scan on 25th September - cancer contained within prostate. (Looking for more detail on next visit this week hopefully)

Booked in for surgery - but waiting list, so currently estimated to be in December. I have stated that I would be available for any cancellation.

I am getting reassurances from medical people that this cancer is slow growing, so no need to be anxious/in a rush, but a voice in my head is telling me otherwise.

Best wishes for the future,

Ian

User

Posted 10 Oct 2018 at 08:32

Hi Ian, I had my prostatectomy via the uncommon Retzius-sparing technique, which still involves being suspended almost upside down like a bat for three hours.

I had no shoulder pain afterwards, and very little pain at all anyway.

Click my profile for full details.

Cheers, John.

User

Posted 10 Oct 2018 at 08:34

If it helps, my RT made absolutely no difference to anything physical, bowels, bladder or wedding tackle size.

User

Posted 10 Oct 2018 at 09:05

Originally Posted by: Online Community Member

I would have expected these factors to all contribute to an improved outcome.

Cheers,

Ian

That is not supported by the stats - open is still slightly more precise with slightly lower error rate - the main attraction of keyhole and robotic keyhole are that they are quicker tecovery and therefore cheaper to the nation. Hospitals that have already invested in the equipment need to get their money's worth and Some NHS trusts that may have been saving up to buy a Da Vinci have changed plans because the benefit isn't enough to justify the spend.

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

User

Posted 10 Oct 2018 at 10:08

Again, so much of this is down to the skill of the surgeon, as regards to success rates and post-operative recovery. “My” surgeon, who has over 3000 prostatectomies under his belt has more or less abandoned open surgery, except in difficult cases in favour of robotic laparoscopic procedures.

I am almost in tears when I read some of the post-operative problems some guys on here suffer, but of course that would depend on how far the tumour had spread in the first place.

No 1 tip, from someone who has been there, and had it done, check out who is going to do it. And as Matron says, check out results and performance statistics for whichever surgeon you end up with, before signing any forms!

User

Posted 13 Oct 2018 at 15:15

Hello John,

I did not think too much of your earlier question, but have now been reflecting on the TRUS biopsy that I had in July.

This was not a pleasant experience, and I wish there had been an alternative available.

Apart from the discomfort, I sensed that this was not medically sound. What if cancerous cells can be carried out of the prostate by the needles to surrounding tissue eg.

I did ask the question to the surgeon/ specialist yesterday, but the method was robustly defended - stating that extensive studies had shown no correlation.

Still, having found out that the tumour(s) are located at the posterior of the prostate - closest to the rectum. I am not suggesting that it has developed there due to the biopsy, but it does seem like an uncomfortable coincidence.

Maybe old Kierkegaard was on to something.....

Cheers,

Ian

User

Posted 13 Oct 2018 at 15:36

Hi Ian,

Matron and others here will no doubt chip in with the medical facts about cancer spread following biopsy, which in the case of PCa biopsies is extremely unlikely.

I would be more concerned about researching all the credentials, experience and outcomes of whoever will carry out your surgery!

Best of luck, as ever.

Cheers, John.

User

Posted 13 Oct 2018 at 15:40

Hello again,

re-read your profile. You seemed to manage to get more detailed information on your condition that I am getting.

Met with surgeon/specialist yesterday, Her consultative manner can best be described as 'brisk' Some questions almost seemed like an affront.

I did get some news though - see updated profile. One point of interest for yourself - I asked what is the possibility or recurrence - I was told 15% - (but somehow I never did get the timespan) This was based on the information she has on me. That seemed a bit better than what you were told - and from a woman who does not pull her punches.

i want to speak to an oncologist next- but that meeting has to be arranged - more waiting!

Ian

User

Posted 13 Oct 2018 at 18:47

There are no known cases of cancer spread through needle tracking at TRUS biopsy although there are some very rare reports of needle tracking from template biopsy.

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

User

Posted 13 Oct 2018 at 19:02

Hi Ian,

If you really want to be bothered about your statistical chances of surviving PCa (I do, being of an inquisitive nature) you can check out this Nomogram which is one of the ones oncologists use.

I have a 96% chance of surviving prostate cancer for fifteen years, by which time I will be much more likely to have died of something else. Am I bovvered? No, but at least I know the forecast which is about as reliable as the Met Office.

https://www.mskcc.org/nomograms/prostate

Edited by member 13 Oct 2018 at 19:06 | Reason: Not specified

User

Posted 13 Oct 2018 at 19:51

Hi Ian,

Appreciate your interest but as has been stated, forum member's details are under their respective profile/bio. (I must precis mine sometime).

I am always prepared to reply to posts but feel that giving my details and treatment here, which is not really helpful in this thread would not be appropriate.

Barry

User

Posted 18 Oct 2018 at 16:54

Heizenburgh again,

thanks to all who have responded to my original post. I have found most of the posts very helpful and have learned a lot.

I now just want to put this thought out there and gauge the reaction.

Recently I revisited an NHS publication ' Localised Prostate Cancer - which was written in 2010.

What I found interesting was a table at the back entitled: 'Comparing the pros and cons of treatment for localised prostate cancer'

Under the heading: How well the treatment works, were the following sets of data:

Surgery EBR Brachytherapy Watchful Waiting

No more treatment needed within 5 x years 75/100 (cases) 75/100 75/100 Not known

Prostate cancer does not spread to bones within 10 years 85/100 Not known Not known 75/100

You do not die from PCa within 10 years 90/100 90/100 90/100 85/100

Looking at these figures, the odds do not appear to be greatly shortened by watchful waiting. I wonder if others have pondered this and decided to pull back from any form of treatment and the associated side effects, and decided just to maintain or even boost their general health.

This is more than an idle thought. I am sure my GP even mentioned this in what was a throwaway remark the last time I visited.

Would we very interested in hearing any views on this,

Best regards to all,

Ian

User

Posted 18 Oct 2018 at 17:33

There is a more recent report (2018) that found that across Europe the 10 and 15 year outcome for Active Surveillance is identical to that of the radical treatments, if all other factors are equal - https://www.europeanurology.com/article/S0302-2838(18)30433-0/pdf

Important to note that watchful waiting is old language and can be interpreted as pretty much doing nothing; it should be confined to the rubbish heap in a modern society. AS must be active - regular PSA tests, annual DRE, annual MRI and additional biopsies as required. My father-in-law died because we didn't understand the difference between WW and AS.

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

User

Posted 18 Oct 2018 at 17:45

I’ve been told I’m watchful waiting .....

User

Posted 21 Oct 2018 at 08:53

Chris,

thanks for sharing this. I read your profile - I hope there is light at the end of the tunnel for you.

Just one question..hopefully not a stupid one - what is QOL?

Cheers,

Ian

User

Posted 21 Oct 2018 at 11:46

Quality of life

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

User

Posted 21 Oct 2018 at 11:52

Originally Posted by: Online Community Member

I’ve been told I’m watchful waiting .....

Perhaps in your case that is accurate? Your cancer is not being managed in an active way at all and you have refused treatments offered. So rather than AS to confirm that all is stable or that things are changing, your team is waiting for it to get bad enough for you to agree to treatment 🤷‍♀️

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

User

Posted 21 Oct 2018 at 12:14

Does that mean your PSAs aren't even checked every few months? Or just wait until substantial physical symptoms appear?

User

Posted 21 Oct 2018 at 14:31

No, CJ still has his PSA checked regularly and it is rising rapidly.

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

User

Posted 23 Oct 2018 at 17:29

I did read this article - in fact I read it a number of times to get some clarity.

What was mostly inferred was that active surveillance was more appropriate for low risk men. With me being Gleason 3:4 and a PSA of >10 I do not consider myself low risk.

The warnings were there for men with intermediate risk: - increased risk of clinical progression / the development of metastatsis - Usually around 4 x greater risk than low risk men (Gleason3:3) This was from the Sunnybrook Hospital (Toronto) 15year Pca mortality rate study.

A similar study at Royal Marsden hospital UK seemed to back up these figures.

Seemingly at odds with these studies was the one conducted in Sweden - which involved over 4,000 men. It showed that the mortality rate were pretty close between AS, surgery and radiotherapy treatments. Frustratingly it did not mention over what time period.

All these figures are open to interpretation. Not sure if I got much comfort from it. Not enough to convince myself that I could go on AS for a significant period of time anyway.

I would be interested to know what others made of that paper's content

Ian

User

Posted 23 Oct 2018 at 23:18

The paper supports AS as a viable treatment for correctly graded suitable candidates. It also confirmed 27% of AS patients end up with active treatment so it's not like AS means 0 treatment.

User

Posted 03 Nov 2018 at 09:35

Hello Tykey,

I wonder if you are still logging in? Good positive news on your RT treatment.

Did you get Hormone therapy before/ during/after the RT. It seems that this treatment can have significant side effects as well. Did you experience any?

Met an oncologist a few days ago to discuss potential radiotherapy. He said I would be on HT for 3 x months, have 20 x sessions (fractions) of RT over a 4 x week period, and 3 x months HT after RT - all of which did not seem too arduous.

Tending towards this treatment rather than surgery now. My GP has recommended same.

I did put myself on the waiting list for surgery a month ago, which is scheduled for December, and I said I would be available for cancellations.

It is time I made up my mind!

Hope you are enjoying life post treatment

Ian

User

Posted 03 Nov 2018 at 15:30

Hi Ian,

I think by now you have a good idea of all the pros and cons. I see the form of RT you are being offered is the hypofractionated form, probably using IMRT. Was either low or high dose Brachytherapy ruled out as statistics suggest this is a slightly more effective form of RT than External Beam as a stand alone radical treatment for suitable men?

Barry

User

Posted 05 Nov 2018 at 20:37

Hello Barry,

thanks for the response.

Brachytherapy does not appeal to me at all. The procedure itself scared me right off.

Yes, I would be treated with hypofractionated radiotherapy here - 20 x fractions over 4 x weeks. My initial thought was - great! it is a shorter period of treatment - but of course the dosage is that bit higher, and therefore the initial side effects could be more intense.

If you were of a cynical nature, you may think this is a clever approach to treat more patients in the same time period....

However I do have an article comparing this to the more conventional lower dose / more fractions, and the long-term results & side effects seem to balance out.

Best wishes,

Ian

User

Posted 05 Nov 2018 at 21:06

In fact, the research showed that side effects were fewer with the 20 x 3Gy or 19 x 3.2Gy that they are with 37 x 2Gy and with only 6 months of HT (I am really surprised by that, particularly with radical RT) you will hopefully find it a walk in the park.

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

User

Posted 06 Nov 2018 at 20:48

Thanks Lyn. I suppose it depends which research you read. I was given the CHHiP trial report by my oncologist.

The term used was ' the hypofractionated schedule - 60Gy in 20 x fractions was not inferior to the conventional 74Gy in 37 fractions'

As for the duration of the HT - I can only assume that they know what they are doing - and this would be all I need. I asked the question on the duration - it was calculated based on 'large scale trials'.

Maybe not a walk in the park though - more like a hike across a ploughed field

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