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User
Posted 13 Mar 2021 at 09:55

Hello all,

I’ve just been diagnosed with prostate cancer in France. As a UK citizen with the language barrier it’s been a bit of a whirlwind getting my head around the terminology and as such it’s a lot to take in.

The urologist who seems excellent informed me that my biopsy came back with a Gleason score of 6(3+3), which apparently was the good news, the bad news however was that out of 14 core samples ( 6 either side and 2 on a target area) 10 have come back positive, the depth that each core sample being found positive is on average around 50%, for example on a 12mm core sample then 6mm is positive.

So, with a psa of 12 he believes I fall into a category that is intermediate risk and I’m now due to get a couple of further tests/scan to see if the cancer is localised or has spread. I am told that following those tests, if they come back ok then I would be looking at surgery to remove the prostate which I am horrified about (55 yrs old) and that radiotherapy wouldn’t be a good option to have.

So, my big dilemma is what to make of it all. One side of me thinks surgery is a bit too radical and is it the best option but what else can I do, is it an option to do nothing or look for alternative treatment?

Any advice on the overall diagnosis and treatment options would be much appreciated and valued, thank you.

User
Posted 16 Mar 2021 at 05:01

I understand you and I've been there, I was diagnosed with localized cancer and at fairly low risk in 2018 at 47 years old. It is a very difficult decision to make because there are possible effects, it directly affects our penis, organ to urinate, reproductive and pleasure.

In my case, the surgery scared me a little too because it was necessary to remove "everything", not just the part of the diseased prostate, the entire gland, and in addition the seminal vesicles and the vas deferens. As for the radiotherapy, what discouraged me are the effects of fatigue but especially that one cannot have surgery if it does not work afterwards. Because of my age, surgery was the best solution and that's what I chose.

I had a robot assisted radical prostatectomy with preservation of the erectile nerves and I am very very satisfied. The cancer was completely eliminated in the first place, then the urinary incontinence was very short and it's perfect today and I hardly realize that I no longer have a prostate.

For sexuality, the erections I would say it took me a few months, at about 6 months they were exactly like before the surgery and my penis is just as sensitive. The big difference is that without prostate and seminal vesicles there is no more ejaculation, My orgasms are there with the sensations but there is no semen coming out of my penis and it will not come back. For the rest, it's going very well

User
Posted 13 Mar 2021 at 13:21

Hi Steve

Sorry you are here. Yes your diagnosis could be a lot worse. G3+3 is just over the edge in to cancer rather than just a bit worrying. I had a higher Gleason than you and a higher PSA, but the similarity between us is how much of the prostate was cancerous, actually mine was about 95% yours is 50% but for both of us we are talking a lot of cancer.

I think you have to wait for all the test results before you can plan any kind of treatment. If the cancer is all contained in the prostate surgery may well be the best choice, if it has started to escape the prostate as was the case for me surgery would be pointless and radiotherapy was recommended as that had a better chance of getting the cells which had escaped. I think with over 50%cancer there is a possibility it will be locally advanced T3, so RT may be advised, but really until you have all the test results all you can do is wait. However when you do get the results post back on here and we should be able to decipher them if anything is not clear. 

Dave

User
Posted 14 Mar 2021 at 12:04

Thanks for the replies. I’m coming around to the fact that surgery seems more commonly offered to younger men, (Steve, thanks for your input) but I’ve not come across success or survival rates although I understand it’s a complex subject with a lot of variables. 
I was researching the side effects of RT this morning which didn’t sound great to be honest and the subsequent difficulty of treating any secondary cancers further down the line, then audiman (thanks for your reply) talks about proton beam therapy which sounds like a positive experience (if that’s possible), I think I need to do some more reading up and consider an appointment with an oncologist. 

Steve.

User
Posted 14 Mar 2021 at 14:00

Be aware that proton beam therapy to the prostate is unproven and whoever told Audiman that it had a 95% success rate was grossly overstating the data. It is not recommended for prostate cancer - even PCUK doesn't support it as a reasonable treatment option at the moment.

Proton beam has had excellent results in trials for 'hard to reach' cancers such as brain tumours, ocular melanomas and for very small children who find it hard to lie still for radiotherapy. Its results in terms of prostate cancer are not good.

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

User
Posted 14 Mar 2021 at 14:50

Until recently there have been very few proton beam machines in the UK. To me the technology sounds excellent. I assumed that they hadn't been used much for prostate cancer because they were too busy being used for the cancers which massively benefit from there use sush as eye cancer, and there wasn't enough time on the machine for the cancers which would only benefit a little bit more from there use. These are just my opinions I have no facts to back any of this up. 

Dave

User
Posted 14 Mar 2021 at 15:22

Originally Posted by: Online Community Member
Thanks for the replies. I’m coming around to the fact that surgery seems more commonly offered to younger men, (Steve, thanks for your input) but I’ve not come across success or survival rates although I understand it’s a complex subject with a lot of variables.

Oh, I forgot to add the obvious, that any surgery obviously has a higher possibility of complications the older you are.

Good luck to everyone coping with the insidious big C

User
Posted 14 Mar 2021 at 15:25

https://prostatecanceruk.org/about-us/projects-and-policies/proton-beam-therapy 

 

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

User
Posted 15 Mar 2021 at 15:51

You could try using a nomogram.  If you look one up and put in your data it will give you a probability of recurrence etc.   This one says don't use it to compare treatments but I suppose many might think about it...   https://www.mskcc.org/nomograms/prostate

 

In general with a 3+3 it should be good although with a psa of 12 it pushes risk up to medium from low.   I haven't read of number of biopsy cores counting in the probability.  Although presumably it implies it's a bigger lesion.  Mine was 13mm, psa 9.9 but the biopsy only found one sample.  It was done before the MRI though.

In general they say the outcome for RT and the op are similar and older men are given RT as it's a strain on the body lying head tilted down in the op.  Some say 75 is an age limit for surgery although they give you tests, ECG etc.

It can be said that RT is possible after an op although that depends on where it has come back.  I see that as an advantage although not one I really want.

Has Brachytherapy not been mentioned or did I miss it above.   To me surgery is a good clean solution, some risks and with a few weeks of discomfort all being well.

All the best, Peter

 

 

User
Posted 15 Mar 2021 at 17:18
It doesn't really matter which research you look at - they all find more or less the same thing. The largest scale research is the EU one from 2019 which showed, as all the others do, that if you have a G6 T1 or T2a / b adenocarcinoma, the outcomes will be the same whether you go for surgery, EBRT or brachy. The outcomes are measured in terms of:

- % likelihood of recurrence at 5 year point

- % likelihood of remission (no evidence of disease) at 10 year point

- % chance of still being here in 10 years

The difference tends to be in side effects so the challenge is in working out a) which treatment gives you the best chance of achieving remission b) whether you can live with the potential and known risks of that treatment and c) if you can't, working out which treatment side effects you can live with that still give you a decent chance of remission.

Known side effects of prostate cancer treatment:

- dry orgasm - all treatments

- infertility - all treatments

- penile shrinkage - very common whichever treatment

- ED - very common whichever treatment - generally with surgery it gets better over time, generally with RT / brachy it starts off fine but gets worse over future years

- incontinence - more likely with surgery than any other treatment - for most men, it improves over time

- bowel damage - more likely with RT than surgery - usually a problem towards the end of the RT treatment & then improves over time.

The side effects of HT are a different kettle of fish but in France, I understand that it is less common for men to be put on HT automatically. You would perhaps want to clarify that with your oncologist.

The NHS says that 90% of men can get an erection 12 months after RP but this may be natural or by using mechanical aids or medication / injections. They don't gather data on whether the erection is sufficiently firm for penetration. The NHS also says that at least 90% of men are using one continence pad per day or less; those who are left with serious incontinence at 12 months will probably have permanent damage. There is no reliable correlation between the age of the patient and the likelihood of permanent ED or incontinence - it is rather more down to luck on the day.

Some men go for focal treatments fully aware that they may not achieve remission and the treatment may need to be repeated in the future (or other treatments might have to be tried) because the risk of unacceptable side effects is lower. That's fine for realistic men and those who can afford to pay for a repeat treatment (where applicable) but for any man to go into focal treatment with unrealistic expectations, the emotional impact of the treatment failing can be significant. Focal options include cryotherapy, focal laser treatment, HIFU, proton beam therapy. We have a member who flew to the USA for FLA because it wasn't available in the UK - he has since had salvage treatment in the UK. We also have members who have travelled to Prague for focal treatments. The important thing is to understand that focal treatments are not as successful and there are still potential side effects, just not as many as with the radical treatments.

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

User
Posted 16 Mar 2021 at 16:29

Reverting for a moment to the subject of Oncologists and Urologists, it is right that they have faith in what they do but don't go beyond what they can reasonably expect to achieve. It was a surgeon who discussed my primary treatment with me following diagnosis and discussion by the MDT. He told me that he would remove my Prostate if I wished but said that he was doubtful that he could remove all the cancer (T3A) and suggested RT might be a better option in my case. I believe most consultants would act in an appropriate way but whatever treatment you have there will be instances where the treatment will fail. I believe there are few cases where Consultants will encourage men to have treatment that they know is inappropriate. There was a case of this in East Surrey where several men were encouraged to go for private HIFU but I think this is rare. https://www.bbc.co.uk/news/uk-england-surrey-56104261

As regards Proton Beam for PCa, there are thousands of men that will attest that it has worked for them https://protonbob.com/ and although on balance comparative surveys with EBRT it has done less well. This maybe because some of these surveys used figures when 'scatter' particles were used rather than the more accurate 'pencil beam' now becoming more widely adopted. With Proton Beam the target area has to be far more accurately identified and carefully calculated so the protons deposit on the tumour due to the very small range of the 'Bragg Peak'. (This becomes more difficult where the tumour is deep within the body than in the eye or neck for example where Proton Beam has showed it's superiority). Improved scans should allow better plotting and show better results in future. With Photons, it is not quite so important because radiation is deposited all along the path to the tumour and beyond it allowing more room for error.

There are a growing number of treatments for PCa and it may be that Antiprotons may be one of them. There is a very large research project underway at GSI Darmstadt in Germany. This is a multinational facility headed by Germany where the UK is involved. All kinds of research will be done there. The initial accelerator will be the existing one on which I had Carbon Ion boost in 2008. The project is called FAIR and is due to be completed in 2025. Take a look here, https://www.gsi.de/en/about_us.htm

 

 

Edited by member 16 Mar 2021 at 16:35  | Reason: to highlight link

Barry
User
Posted 16 Mar 2021 at 17:01

Hello Steve

I am sorry to hear you are going through this. Due to Covid restrictions, I like you, got diagnosed abroad, in Morocco. My first PSA test, result 64, was October 2020 All the specialist here have been trained in France and speak French. So like you it was a whirlwind. There's a difference in approach between Francophone and Anglo-Saxon specialists, here they test PSA regularly much earlier and treat it as a real cancer at a much earlier stage. To add to the confusion I have been told there are 'old school' specialists and younger ones. Old school seem to be more inclined to palliative care and younger to zap it.

I was lucky enough to find an Irish/UK GP here, and she liaised with the Oncologist. I found it much easier to hook into the empathy with her in our native language. Something I definitely needed. I would say all the technicians, nurses, radiologists etc have been wonderful. And here it was so quick to get fixed up with scans, tests. The Specialist Nurses on the site here are wonderful too, and you can Livechat with them.

As well as sympathising with you over the language barrier, and also the speed which it happens, I also found all the information available overwhelming. Before I was used to going to a Doctor, diagnosis, medication. With this cancer there are options on treatment and you have to decide which to take.  You can find Internet services for translation of tests and scan results. That helped too  I would say if you go down the RT route make sure you know the exact procedure and timings for prepping, that was a huge source of stress for me at first. Once it was clarified how priority was worked out it took so much stress away.

I wish you well on your journey.

Michael

User
Posted 02 Apr 2021 at 18:32
No, nothing went wrong - it is just a sad fact that about 30% of men who choose surgery go on to need further treatment. Statistically, aman with a very small T1a diagnosis is less likely to have a recurrence and a man with a T2b / c / T3a is more likely to have a recurrence (and some men with T3 go into the op knowing that they will also need adjuvant RT) but that isn't always the case - my husband was diagnosed with a T1a so small that it couldn't even be seen on the scans but it turned out the scans were over-optimistic & he had a recurrence two years post-op.

Your consultant should be able to tell you (truthfully) what the likelihood is of you needing further treatment post-op.

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

User
Posted 04 Apr 2021 at 09:50
Hello Steve

Very glad to hear that they think your cancer is localised.

My CT scan was, I think, abdomen. When I had my bone scan there was a hot spot on my shoulder, which is an unusual place. It was interpreted as a suspected secondary prostate bone cancer on my shoulder. My oncologist at the time wanted to leave it at that, saying the HT would stop it growing, and it would only be treated if it hurt!. I went to an oncologist who offered a Choline PET Scan and the option of Steriotactic radiotherapy on my shoulder. I was set up for the CPS but the first appointment didn't work out. I started the SRT on the shoulder and then had the scan. The Doctors/Radiologists at the clinic weren't sure from the bone scan if my shoulder was a secondary, and their initial reaction to the CPS was unsure too, and if it was it was very small. In the end their written report said it was. Its been zapped and my oncologist says no bone cancer now. All of this information came in French, so not easy to navigate.

The point of telling you this is I expected clear answers from the scans, but it isn't always easy even for specialist to know all the answers. As others have said, seek out as much info as possible, stay with the confusion that can cause, and then follow the best route you feel comfortable with. Good luck on your journey.

Michael

User
Posted 21 Apr 2021 at 09:03

I haven't had surgery so can't speak from experience, but pretty much everyone agrees pelvic floor exercises (pfe) are very important, and you should start now rather than waiting until after surgery. I believe you can find videos on YouTube on how to do them properly, if you don't do them properly you may be inadvertently wasting your time exercising buttock muscles and others, which are close to the correct muscles but not quite the right ones. 

Dave

User
Posted 21 Apr 2021 at 22:03
Hi Steve,

Just thought I’d offer a thought as we’re the same age, I had surgery 2 years ago. The decision for me was relatively easy as I was diagnosed with T3 and G9 so I just wanted it gone.

Leading up to surgery, aside from general fitness, I’d second the recommendation to start the pelvic floor exercises. There’s an app called Squeezy for men to help remind you. I still use it now and have not had any significant continence issues.

Post surgery take it easy. Walk a bit each day, and gradually increase your activity levels as you feel stronger. Depending on how physical your work is you might need to be ready to take a few weeks off.

Hope all goes well for you.

User
Posted 21 Apr 2021 at 22:05
PFE's definitely, the best way to do them is have lots of sex, also a good idea as you will be handicapped in that department for a while after the op!

User
Posted 22 Jun 2021 at 18:25
Make sure you get an ultra sensetive PSA test, if that is a < 0.008 you should be good for a long remission.

If it isn't then ajuvant RT Inc any lymph nodes will probably be recommended.

Fingers crossed for a great PSA result!

User
Posted 17 Jul 2021 at 16:11

Sorry your reading is 0.32. Are you seeing your urologist for a post op review? Once you and your doctors have the post op histology you will have a better idea of what is next.

I would imagine some scanning and a decision on salvage/adjuvant radiotherapy with or without hormone therapy depending on histology and scans. 
I hope you have more information soon. 

Ido4

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User
Posted 13 Mar 2021 at 13:21

Hi Steve

Sorry you are here. Yes your diagnosis could be a lot worse. G3+3 is just over the edge in to cancer rather than just a bit worrying. I had a higher Gleason than you and a higher PSA, but the similarity between us is how much of the prostate was cancerous, actually mine was about 95% yours is 50% but for both of us we are talking a lot of cancer.

I think you have to wait for all the test results before you can plan any kind of treatment. If the cancer is all contained in the prostate surgery may well be the best choice, if it has started to escape the prostate as was the case for me surgery would be pointless and radiotherapy was recommended as that had a better chance of getting the cells which had escaped. I think with over 50%cancer there is a possibility it will be locally advanced T3, so RT may be advised, but really until you have all the test results all you can do is wait. However when you do get the results post back on here and we should be able to decipher them if anything is not clear. 

Dave

User
Posted 13 Mar 2021 at 13:43

Hello Dave,

Thanks for the reply and for relaying in part your diagnosis which helps out a lot. As you advise I’ll see how the other tests go so I can get a better understanding on where the next course of action takes me. I have to say that having a forum like this is a massive help is searching for answers and ultimately support. Thanks.

User
Posted 13 Mar 2021 at 14:27

Hi Steve,

I'm sure you will find plenty of useful advice on here.

Knowing whether its contained within the prostate is definitely very important and with a Gleeson score of 3+3 you should have plenty of options

I went the surgery route at 57 this time last year-check my profile if you want to know more

Good luck

User
Posted 13 Mar 2021 at 15:12
Have they said why RT wouldn’t be suitable
User
Posted 13 Mar 2021 at 16:20
Don’t know if this is of any consolation to you, but if you had critical illness insurance with a UK insurance company, many would not pay out as Gleason 3+3=6 is not classed as ‘life threatening”!

Best of luck.

Cheers, John.

User
Posted 13 Mar 2021 at 16:28

Thanks for the replies, they seem to be of the opinion that RT wouldn’t be a good option for me because if they didn’t get all the cancer then operating afterwards wouldn’t be an option. It was explained fairly strongly that being aged 55 the option of operating would be best, so I’m trying to get some opinions and weigh up the options.  

Steve.

User
Posted 13 Mar 2021 at 16:41
I think that is a surgeon's bias. Try to get an appointment with an oncologist before you make your decision - brachytherapy and external beam RT are just as effective as surgery and, particularly with brachy, with fewer side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Mar 2021 at 18:50
Surgeons bias ? Does exist , my mate who had pc many yrs back told me when he told the surgeon he wanted the RT route , he was quite abrupt and said ok you better see the RT oncologist !!! Then blow me when I had my appointment to see the surgeon when I mentioned I want to to go down the RT route he was quite sharp saying the same to me ! I think surgeons,which I have the most respect for , just love the challenge and want another notch on their record , I hope that don’t put surgeons in a bad light which I deffo don’t want to do . God bless the nhs .
User
Posted 14 Mar 2021 at 01:27
I wasn't being negative about surgeons, it is just a fact of life. Once the diagnosis is complete, if a number of different treatments are all likely to be as effective as each other, the surgeon will say surgery is best while the onco will say that a type of radiotherapy is best.

We often see here that a surgeon has said surgery is best option because if it fails, at least you can have salvage RT. It always strikes me as an odd thing to say ... why is the surgeon already thinking about if it fails?

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

User
Posted 14 Mar 2021 at 08:19

Morning,

Well I’ve just been on a long walk with the dog after a sleepless night, it should be followed by a ride through the countryside on my bike with a mate or two but the thought of sitting on my saddle and cycling after the biopsy last week brings tears to my eyes, maybe next week fingers crossed. It seems this subject and being diagnosed with prostate cancer is all consuming, I can already feel the impact it is having and will have in the future.

It’s interesting to hear views on the potential bias that surgeons or other health professionals may have towards treatment options, maybe it was wishful thinking to imagine a team of doctors coming together and making an informed decision on the best treatment to offer. I’ll have to wait and see what is said after the next scans have been done towards the end of this month.

I don’t suppose anyone has come across information or a study that discusses with ‘hard evidence’ the benefits or pros and cons for surgery v RT showing success and survival rates? It would be really useful to have some factual based information to research as is hearing how other people on this forum have progressed since their diagnosis. Thanks again to those offering advice and information.

Steve.

User
Posted 14 Mar 2021 at 10:52

Hi another Steve 😎

I wasn't exactly knowledgeable about the subject by any definition so paid attention to the specialist cancer nurse after initial diagnosis. In summary, the outcome for Radiotherapy or removal are pretty much the same. On the slight pro and con side of things (and I will happily be corrected if I am wrong), for surgery it may be that slight mets have already escaped and are too small to be detected, which is where the salvage RT would come in. With RT there is a theoretical risk of additional cancers appearing later on from the radiation, salvage RT is usually ruled out if any re-occurance?

Strictly on an anecdotal basis only, those under 60 seem to be advised surgery, those over 65 seem to be advised RT, which leaves a block in the middle that could go either way.

Like I said, I'm no expert though 😎

Edited by member 14 Mar 2021 at 15:24  | Reason: Not specified

Good luck to everyone coping with the insidious big C

User
Posted 14 Mar 2021 at 11:39

Steve I have just come through something called Proton Beam therapy which finished 6 weeks ago and I have to say that the whole experience wasn't bad at all.  I had a spaceoar fit to protect the bowel and reduce side effects.

I was advised by my specialist to have it removed but like Lyn has pointed out surgeons will recomend this and that is what the specialist nurse told me would happen.    I decided to look at all options and decided to have an appointment with an oncologist who I found excellent with plenty of information for me and no pressure to go either route.   After I left his office which was about an hour in total I knew I wanted to go the proton beam route.   The outcome I was told was a 95% sucess rate and this was the same as surgery.   Everyones case is different but my experience has been good, infact so good I'm concerned did it really work as I have hardly been inconvenienced at all.

Good luck but if you're like me once the decision was made it was like lifting a huge weight off my shoulders and I just got on with everything.  (I'm not a worrying type person though and believe you cross the bridges as you come to them and no point in worrying about something that hasn't happened yet)

 

User
Posted 14 Mar 2021 at 11:55

Originally Posted by: Online Community Member

I don’t suppose anyone has come across information or a study that discusses with ‘hard evidence’ the benefits or pros and cons for surgery v RT showing success and survival rates?

Type in to Google "prostate cancer surgery vs radiotherapy" the first few pages are general advice from charities like these but by about page 3 you start seeing references to scientific papers. You will note that most of these studies readily admit that they are not reliable as they are not random, so massive bias is already in the samples.

The topic of choice between treatments is always coming up on this forum. I think the first thing you have to do is look at your own psychy, you are going to make a decision about prostate cancer, but are you sure your decision making process is robust. Hardly anyone makes a rational decision about anything, we all think we do, we all try to, but personally I like red sports cars and there is nothing rational about that.

Most people faced with the choice initially choose surgery. It seems to offer a degree of certainty, but more importantly it is a brutal attack with sharp knives on the evil cancer which you want exorcised from your body, and thrown in the hospital incinerator where it will never harm anyone again. As you may have guessed the previous sentence is not entirely rational, that is why I think patients given a choice really have to step back and analyse how they will make that choice. And to make that analysis you have to step back and analyse how you can analyse your own psychology. Even Freud and Jung never achieved this they are the greats of psychoanalysis, but now their theories are considered bunk. 

I was lucky my medical team said there is only one treatment which has any chance of curing you so that is the one you should have.

So if you are given a choice it is because both treatments are considered equal effective in your case. Look at the side effects and decide which you consider least worst. If you still can't decide flip a coin. 

Dave

User
Posted 14 Mar 2021 at 12:04

Thanks for the replies. I’m coming around to the fact that surgery seems more commonly offered to younger men, (Steve, thanks for your input) but I’ve not come across success or survival rates although I understand it’s a complex subject with a lot of variables. 
I was researching the side effects of RT this morning which didn’t sound great to be honest and the subsequent difficulty of treating any secondary cancers further down the line, then audiman (thanks for your reply) talks about proton beam therapy which sounds like a positive experience (if that’s possible), I think I need to do some more reading up and consider an appointment with an oncologist. 

Steve.

User
Posted 14 Mar 2021 at 12:24

Thanks audiman for the message, (unable to respond via pm as it says I’m a new user). The site you provided is good, I’m in SW France so trying to find out if they do that treatment in my area.

Steve.

User
Posted 14 Mar 2021 at 14:00

Be aware that proton beam therapy to the prostate is unproven and whoever told Audiman that it had a 95% success rate was grossly overstating the data. It is not recommended for prostate cancer - even PCUK doesn't support it as a reasonable treatment option at the moment.

Proton beam has had excellent results in trials for 'hard to reach' cancers such as brain tumours, ocular melanomas and for very small children who find it hard to lie still for radiotherapy. Its results in terms of prostate cancer are not good.

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

User
Posted 14 Mar 2021 at 14:21

All the comparisons I've read of proton beam therapy for prostate cancer compare current proton beam with 5+ year old IMRT without image guiding. I don't believe anyone does non-image-guided radiotherapy today, so proton beam and EBRT use exactly the same image guiding nowadays. You might wonder why the proton beam folks don't publish valid comparable treatment results.

I actually think proton beam could have some valid treatment cases for prostate cancer for dealing with recurrent mets in lymph nodes or bones in the way SBRT/Cyberknife is used today, but I don't see it being pushed for such treatments.

 

User
Posted 14 Mar 2021 at 14:50

Until recently there have been very few proton beam machines in the UK. To me the technology sounds excellent. I assumed that they hadn't been used much for prostate cancer because they were too busy being used for the cancers which massively benefit from there use sush as eye cancer, and there wasn't enough time on the machine for the cancers which would only benefit a little bit more from there use. These are just my opinions I have no facts to back any of this up. 

Dave

User
Posted 14 Mar 2021 at 15:22

Originally Posted by: Online Community Member
Thanks for the replies. I’m coming around to the fact that surgery seems more commonly offered to younger men, (Steve, thanks for your input) but I’ve not come across success or survival rates although I understand it’s a complex subject with a lot of variables.

Oh, I forgot to add the obvious, that any surgery obviously has a higher possibility of complications the older you are.

Good luck to everyone coping with the insidious big C

User
Posted 14 Mar 2021 at 15:25

https://prostatecanceruk.org/about-us/projects-and-policies/proton-beam-therapy 

 

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

User
Posted 14 Mar 2021 at 18:48

Hi Lyn it was the oncologist who told me that surgery or proton would have the same result with proton having far less side effects. My initial thoughts were just get it out then its gone but as he said there was no guarantee that a surgeon could 100% always be able to remove everything.  Originally the treatment was to be stereotactic Radiothereapy but it was me that brought up Proton Beam and the rest is history.  He  asked if I would like to speak to a couple of his patients that had undergone this treatment and I said yes.   One was almost 2 years after treatment and the other nearly 4 years.    Both highly recomended it and both said that they were still ok PSA wise.   During the treatment I said to one of the radiographers that I guessed they never really knew what the outcomes of patients were after treatment but they said they did as they followed up 2 weeks after treatment then three month and 6 month then yearly.    They said the feedback was good.  Now the cynical side of me said I wouldn't expect them to say anything else as they were being paid.

All I can say is that the whole process was very easy, yes I was in discomfort after treatment when peeing and feeling the need to pee every 30 mins or so at times but once treatment stopped I was back to normal after about 4 days and I kept up the min of 2L of water per day.  They had warned me not to be shocked if I passed blood back and front and felt very tired but todate I have had none of that and in 5 months they will carry out another MRI. I had 7 fractions every other day and it would be nice to think that in 5 years or 10 I'm able to report back here that everything is still fine and if it isn't then I will deal with whatever is thrown at me.    I wish I could find the write up where it said that in not so many years ahead proton will replace surgery but sods law I cannot.

User
Posted 15 Mar 2021 at 15:51

You could try using a nomogram.  If you look one up and put in your data it will give you a probability of recurrence etc.   This one says don't use it to compare treatments but I suppose many might think about it...   https://www.mskcc.org/nomograms/prostate

 

In general with a 3+3 it should be good although with a psa of 12 it pushes risk up to medium from low.   I haven't read of number of biopsy cores counting in the probability.  Although presumably it implies it's a bigger lesion.  Mine was 13mm, psa 9.9 but the biopsy only found one sample.  It was done before the MRI though.

In general they say the outcome for RT and the op are similar and older men are given RT as it's a strain on the body lying head tilted down in the op.  Some say 75 is an age limit for surgery although they give you tests, ECG etc.

It can be said that RT is possible after an op although that depends on where it has come back.  I see that as an advantage although not one I really want.

Has Brachytherapy not been mentioned or did I miss it above.   To me surgery is a good clean solution, some risks and with a few weeks of discomfort all being well.

All the best, Peter

 

 

User
Posted 15 Mar 2021 at 17:18
It doesn't really matter which research you look at - they all find more or less the same thing. The largest scale research is the EU one from 2019 which showed, as all the others do, that if you have a G6 T1 or T2a / b adenocarcinoma, the outcomes will be the same whether you go for surgery, EBRT or brachy. The outcomes are measured in terms of:

- % likelihood of recurrence at 5 year point

- % likelihood of remission (no evidence of disease) at 10 year point

- % chance of still being here in 10 years

The difference tends to be in side effects so the challenge is in working out a) which treatment gives you the best chance of achieving remission b) whether you can live with the potential and known risks of that treatment and c) if you can't, working out which treatment side effects you can live with that still give you a decent chance of remission.

Known side effects of prostate cancer treatment:

- dry orgasm - all treatments

- infertility - all treatments

- penile shrinkage - very common whichever treatment

- ED - very common whichever treatment - generally with surgery it gets better over time, generally with RT / brachy it starts off fine but gets worse over future years

- incontinence - more likely with surgery than any other treatment - for most men, it improves over time

- bowel damage - more likely with RT than surgery - usually a problem towards the end of the RT treatment & then improves over time.

The side effects of HT are a different kettle of fish but in France, I understand that it is less common for men to be put on HT automatically. You would perhaps want to clarify that with your oncologist.

The NHS says that 90% of men can get an erection 12 months after RP but this may be natural or by using mechanical aids or medication / injections. They don't gather data on whether the erection is sufficiently firm for penetration. The NHS also says that at least 90% of men are using one continence pad per day or less; those who are left with serious incontinence at 12 months will probably have permanent damage. There is no reliable correlation between the age of the patient and the likelihood of permanent ED or incontinence - it is rather more down to luck on the day.

Some men go for focal treatments fully aware that they may not achieve remission and the treatment may need to be repeated in the future (or other treatments might have to be tried) because the risk of unacceptable side effects is lower. That's fine for realistic men and those who can afford to pay for a repeat treatment (where applicable) but for any man to go into focal treatment with unrealistic expectations, the emotional impact of the treatment failing can be significant. Focal options include cryotherapy, focal laser treatment, HIFU, proton beam therapy. We have a member who flew to the USA for FLA because it wasn't available in the UK - he has since had salvage treatment in the UK. We also have members who have travelled to Prague for focal treatments. The important thing is to understand that focal treatments are not as successful and there are still potential side effects, just not as many as with the radical treatments.

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

User
Posted 15 Mar 2021 at 17:23

The real benefit of surgery is that you are not exposing your body to radiation!

It also gives you peace of mind if you get a "less than" PSA reading post surgery.

You also avoid Hormone therapy!

3 pretty convincing arguments in my book - assuming you are suitable for surgery.

Edited by member 15 Mar 2021 at 17:24  | Reason: Not specified

User
Posted 15 Mar 2021 at 17:26

Thanks for the information. Lyn I’ll look up that research and see what useful information I can get from it.

Steve.

User
Posted 15 Mar 2021 at 19:51

The other thing that I meant to say was that the same research found very little difference between men who opted for active surveillance and those who had radical treatment, even at the 10 year mark. The newspaper headlines at the time were that treatment (with all of the associated side effects) really offers very little benefit! That wouldn’t be true of a man with a T2c T3 perhaps or a man with a G8 and above but they wouldn’t usually be offered AS anyway.

Here is one of the reports from ProtecT

https://www.europeanurology.com/article/S0302-2838(19)30837-1/pdf

 

Edited by member 15 Mar 2021 at 19:56  | Reason: Not specified

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

User
Posted 15 Mar 2021 at 19:56
Franci, as you well know, a man can get an undetectable PSA and still have a recurrence in the future. My dad had undetectable PSA for 18 years but it still came back... one of the risks of getting old, I guess.

And the risk of bowel cancer in the UK is something like 16% - radiotherapy is believed to increase the risk by 4% so hardly a deal breaker - about the same risk as dying under general anaesthetic!

Avoiding HT ... yes, John would agree with you but many men find it isn’t as bad as they feared.

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

User
Posted 15 Mar 2021 at 21:56

Originally Posted by: Online Community Member
Franci, as you well know, a man can get an undetectable PSA and still have a recurrence in the future. My dad had undetectable PSA for 18 years but it still came back... one of the risks of getting old, I guess.
.

If you have a less than with ultra sensitive test it's probably as good as it can be. You never get that with radiotherapy.

Radiation is best avoided for as long as possible. 

User
Posted 15 Mar 2021 at 22:39
In your opinion - lots of people would disagree 🤷‍♀️
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Mar 2021 at 05:01

I understand you and I've been there, I was diagnosed with localized cancer and at fairly low risk in 2018 at 47 years old. It is a very difficult decision to make because there are possible effects, it directly affects our penis, organ to urinate, reproductive and pleasure.

In my case, the surgery scared me a little too because it was necessary to remove "everything", not just the part of the diseased prostate, the entire gland, and in addition the seminal vesicles and the vas deferens. As for the radiotherapy, what discouraged me are the effects of fatigue but especially that one cannot have surgery if it does not work afterwards. Because of my age, surgery was the best solution and that's what I chose.

I had a robot assisted radical prostatectomy with preservation of the erectile nerves and I am very very satisfied. The cancer was completely eliminated in the first place, then the urinary incontinence was very short and it's perfect today and I hardly realize that I no longer have a prostate.

For sexuality, the erections I would say it took me a few months, at about 6 months they were exactly like before the surgery and my penis is just as sensitive. The big difference is that without prostate and seminal vesicles there is no more ejaculation, My orgasms are there with the sensations but there is no semen coming out of my penis and it will not come back. For the rest, it's going very well

User
Posted 16 Mar 2021 at 16:29

Reverting for a moment to the subject of Oncologists and Urologists, it is right that they have faith in what they do but don't go beyond what they can reasonably expect to achieve. It was a surgeon who discussed my primary treatment with me following diagnosis and discussion by the MDT. He told me that he would remove my Prostate if I wished but said that he was doubtful that he could remove all the cancer (T3A) and suggested RT might be a better option in my case. I believe most consultants would act in an appropriate way but whatever treatment you have there will be instances where the treatment will fail. I believe there are few cases where Consultants will encourage men to have treatment that they know is inappropriate. There was a case of this in East Surrey where several men were encouraged to go for private HIFU but I think this is rare. https://www.bbc.co.uk/news/uk-england-surrey-56104261

As regards Proton Beam for PCa, there are thousands of men that will attest that it has worked for them https://protonbob.com/ and although on balance comparative surveys with EBRT it has done less well. This maybe because some of these surveys used figures when 'scatter' particles were used rather than the more accurate 'pencil beam' now becoming more widely adopted. With Proton Beam the target area has to be far more accurately identified and carefully calculated so the protons deposit on the tumour due to the very small range of the 'Bragg Peak'. (This becomes more difficult where the tumour is deep within the body than in the eye or neck for example where Proton Beam has showed it's superiority). Improved scans should allow better plotting and show better results in future. With Photons, it is not quite so important because radiation is deposited all along the path to the tumour and beyond it allowing more room for error.

There are a growing number of treatments for PCa and it may be that Antiprotons may be one of them. There is a very large research project underway at GSI Darmstadt in Germany. This is a multinational facility headed by Germany where the UK is involved. All kinds of research will be done there. The initial accelerator will be the existing one on which I had Carbon Ion boost in 2008. The project is called FAIR and is due to be completed in 2025. Take a look here, https://www.gsi.de/en/about_us.htm

 

 

Edited by member 16 Mar 2021 at 16:35  | Reason: to highlight link

Barry
User
Posted 16 Mar 2021 at 17:01

Hello Steve

I am sorry to hear you are going through this. Due to Covid restrictions, I like you, got diagnosed abroad, in Morocco. My first PSA test, result 64, was October 2020 All the specialist here have been trained in France and speak French. So like you it was a whirlwind. There's a difference in approach between Francophone and Anglo-Saxon specialists, here they test PSA regularly much earlier and treat it as a real cancer at a much earlier stage. To add to the confusion I have been told there are 'old school' specialists and younger ones. Old school seem to be more inclined to palliative care and younger to zap it.

I was lucky enough to find an Irish/UK GP here, and she liaised with the Oncologist. I found it much easier to hook into the empathy with her in our native language. Something I definitely needed. I would say all the technicians, nurses, radiologists etc have been wonderful. And here it was so quick to get fixed up with scans, tests. The Specialist Nurses on the site here are wonderful too, and you can Livechat with them.

As well as sympathising with you over the language barrier, and also the speed which it happens, I also found all the information available overwhelming. Before I was used to going to a Doctor, diagnosis, medication. With this cancer there are options on treatment and you have to decide which to take.  You can find Internet services for translation of tests and scan results. That helped too  I would say if you go down the RT route make sure you know the exact procedure and timings for prepping, that was a huge source of stress for me at first. Once it was clarified how priority was worked out it took so much stress away.

I wish you well on your journey.

Michael

User
Posted 02 Apr 2021 at 08:23

Thank you for all the comments and words of advice which I find very encouraging.

By way of an update I’ve recently had my bone and ct scans done which appear to be all clear showing the cancer is localised which I’m relieved about. I did recently discover that a mutual friend here in France has just undergone surgery and had his prostate removed, I went to see him yesterday to have a chat and to see how he was getting on. It transpires that his bone and ct scans were also clear which encouraged him to go down the road of surgery, however after a post surgery psa check they found it hadn’t significantly gone down. The consequence of this is that he now has to have radiotherapy and possibly hormone treatment as they believe the cancer has spread into his hip bone, this was confirmed with a pet scan. What a bloody awful situation to be in.

I am due to see a radiologist in ten days time, ie the person that will treat me if I opt for the radiotherapy. I hope to find out what is on offer. Does anyone have any thoughts on pet scans picking up cancer where a conventional scan misses cancer in the bones? 

The surgeon who would perform the operation on me, if I go down that route explained a couple of days ago the whole process which actually didn’t sound too bad. I believe we asked all the pertinent questions and felt almost relieved to come away with the answers. He explained that the surgery would be done using a key hole techniques ie 5 holes (not robotic) and he would be assisted by another doctor/surgeon, he says his experience goes back 5 years with an average of 30 surgeries of this type each year so in total around 150, it doesn’t sound a lot but researching his ability is very difficult although I don’t have any alarm bell ringing with regards to his professional ability.

Steve.

User
Posted 02 Apr 2021 at 14:44
My own surgeon, classed by me as #1 in the world, but by his peers at least, in the top twenty, told me he wouldn’t send a friend or family member for prostatectomy to any surgeon who does less than 100 operations a year.

Two friends had surgery the same as me, one with a prestigious surgeon, by coincidence a partner of my own surgeon in his private clinic, and the other by his local NHS urologist.

They both had recurrence within a few weeks and had to have hormone and radiation therapies. We are all fine now.

Another friend (they come out of the woodwork don’t they?) has just had a course of RT only and has been told he is all clear.

So, look into the path you want to take, take in advice, and think twice about your thirty a year surgeon.

Best of luck.

Cheers, John.

User
Posted 02 Apr 2021 at 15:21

John,

I presume that your two friends who had reoccurrences had their surgery by surgeons who were very experienced and yet something must have gone wrong. 

Steve.

User
Posted 02 Apr 2021 at 18:21
Yes, the one had his operation from a top-rated surgeon (he is big in banking, so money was no object), and the other was operated on by his local NHS consultant.

Frankly, despite how many scans and biopsies you have, no-one knows the extent of the cancer until the surgeon gets in there. There may be extra-capsular cancerous cells that escaped prior to the operation.

The reason a more experienced surgeon is preferable, is that you are more likely to retain continence and potentially erectile function. My world-class surgeon retained my continence but stole my erections together with 2” off my dick!

I still love him!

You will note my other friend had radiotherapy only, and he has been told he is “all clear”. And there is a train of thought that people in the future will scoff at the idea of prostate excision, when then, the cancer is treated by radiation alone.

Download the “Tool Kit” information folder from the publications section of this charity, to get you clued up about which treatment plan will be best for you.

Cheers, John

User
Posted 02 Apr 2021 at 18:32
No, nothing went wrong - it is just a sad fact that about 30% of men who choose surgery go on to need further treatment. Statistically, aman with a very small T1a diagnosis is less likely to have a recurrence and a man with a T2b / c / T3a is more likely to have a recurrence (and some men with T3 go into the op knowing that they will also need adjuvant RT) but that isn't always the case - my husband was diagnosed with a T1a so small that it couldn't even be seen on the scans but it turned out the scans were over-optimistic & he had a recurrence two years post-op.

Your consultant should be able to tell you (truthfully) what the likelihood is of you needing further treatment post-op.

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

User
Posted 04 Apr 2021 at 09:50
Hello Steve

Very glad to hear that they think your cancer is localised.

My CT scan was, I think, abdomen. When I had my bone scan there was a hot spot on my shoulder, which is an unusual place. It was interpreted as a suspected secondary prostate bone cancer on my shoulder. My oncologist at the time wanted to leave it at that, saying the HT would stop it growing, and it would only be treated if it hurt!. I went to an oncologist who offered a Choline PET Scan and the option of Steriotactic radiotherapy on my shoulder. I was set up for the CPS but the first appointment didn't work out. I started the SRT on the shoulder and then had the scan. The Doctors/Radiologists at the clinic weren't sure from the bone scan if my shoulder was a secondary, and their initial reaction to the CPS was unsure too, and if it was it was very small. In the end their written report said it was. Its been zapped and my oncologist says no bone cancer now. All of this information came in French, so not easy to navigate.

The point of telling you this is I expected clear answers from the scans, but it isn't always easy even for specialist to know all the answers. As others have said, seek out as much info as possible, stay with the confusion that can cause, and then follow the best route you feel comfortable with. Good luck on your journey.

Michael

User
Posted 21 Apr 2021 at 08:26

Hello,

As an update I have been struggling with this decision between surgery and radiotherapy/brachytherapy and it appears after some consultations that brachytherapy would be possible but because of a couple of other risk factors ie psa level greater than 10 I would probably need radiotherapy and potentially hormone therapy also. So, it feels like I’ve gone around in circles a bit but at least we have gathered all the relevant information before making an informed decision.

Anyway, my GP (France), urologist and radiotherapy guy all recommend surgery due to the potential positive outcome/my age being 55 and all other side effects from radiotherapy/brachytherapy/ hormone treatment. I went into this determined to minimise my side effects and take a rational approach to making a decision between surgery v radiotherapy. It seems surgery is going to be the way forward for me and I’ve made an appointment with the urologist in 2 weeks time to book a slot for the procedure, I’m sure it’s been said before but the stress has eased somewhat since making that decision and I’m feeling much more positive about the whole experience.

I’m now in the process of getting my body ready for the procedure by cycling and working out each day which I would do anyway but now feel particularly motivated as I would like to make a good recovery post op. Does anyone have any ‘top tips’ of what else I should be working on to aid a better recovery? Best wishes to all.

Steve. 

User
Posted 21 Apr 2021 at 09:03

I haven't had surgery so can't speak from experience, but pretty much everyone agrees pelvic floor exercises (pfe) are very important, and you should start now rather than waiting until after surgery. I believe you can find videos on YouTube on how to do them properly, if you don't do them properly you may be inadvertently wasting your time exercising buttock muscles and others, which are close to the correct muscles but not quite the right ones. 

Dave

User
Posted 21 Apr 2021 at 22:03
Hi Steve,

Just thought I’d offer a thought as we’re the same age, I had surgery 2 years ago. The decision for me was relatively easy as I was diagnosed with T3 and G9 so I just wanted it gone.

Leading up to surgery, aside from general fitness, I’d second the recommendation to start the pelvic floor exercises. There’s an app called Squeezy for men to help remind you. I still use it now and have not had any significant continence issues.

Post surgery take it easy. Walk a bit each day, and gradually increase your activity levels as you feel stronger. Depending on how physical your work is you might need to be ready to take a few weeks off.

Hope all goes well for you.

User
Posted 21 Apr 2021 at 22:05
PFE's definitely, the best way to do them is have lots of sex, also a good idea as you will be handicapped in that department for a while after the op!

User
Posted 22 Jun 2021 at 10:52

Hello,

As an update I’m 3 weeks post RP and recovering well. I,ve been seeing a physio on the French system and most issues with incontinence have been addressed to the point I’m now dry during the day without pads so on that score I’m very happy.

I went in to see the surgeon last week who gave me the good and bad news scenario again in that the cancer within the prostate was contained with no positive margins but then went on to say that 3 lymph nodes out of 17 removed showed signs of cancer, my Gleason score was upgraded from 3 + 3 to a 3 + 4. So now he says that there is a possibility that I may need further treatment in the form of radiation therapy, it sounds to me  like if they found cancer in 3 lymph nodes then the chance is pretty high that it’s spread. 

So I suppose the question is does anyone know what kind of further treatment would be an option for me, with time frames and pros and cons, just trying to be prepared for seeing the surgeon again once I have my first psa result in 3 weeks time which will be 6 weeks post op. I have to say I was knocked for 6 last week with this information about the lymph nodes, it hit hard and I feel like I’m never going to get anywhere near to getting off this roller coaster of bad news. 

Steve.

 

User
Posted 22 Jun 2021 at 18:25
Make sure you get an ultra sensetive PSA test, if that is a < 0.008 you should be good for a long remission.

If it isn't then ajuvant RT Inc any lymph nodes will probably be recommended.

Fingers crossed for a great PSA result!

User
Posted 17 Jul 2021 at 16:02

Well I’ve just received my psa test result 6 weeks after surgery and it came back as 0.32, this doesn’t seem like the best result to me but I’m due to see the doctor in a couple of days time. Any words of wisdom out there on what may be my next course of options and what I should be looking out for or avoiding, many thanks.

User
Posted 17 Jul 2021 at 16:11

Sorry your reading is 0.32. Are you seeing your urologist for a post op review? Once you and your doctors have the post op histology you will have a better idea of what is next.

I would imagine some scanning and a decision on salvage/adjuvant radiotherapy with or without hormone therapy depending on histology and scans. 
I hope you have more information soon. 

Ido4

User
Posted 17 Jul 2021 at 17:54
Just check that your PSA reading is 0.32ng/mL - sometimes in France they report it as ug/mL or nmol/L
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jul 2021 at 11:11

Hi Lyn, never heard of the results coming back that are not in ng/mL in France but anyway yes mine are in that format.

 
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