Treatments

Hi mate I think i will soon be in the same situation as you and we are similar ages so I no exactly what your going through this forum seems bloody great and I'm sure we will get some good advice 

Good afternoon.

I have been in the same situation, although, in the end radiotherapy was the only option for me (locally or regionally advanced, with one lymph node affected), so that's what I am currently having.

However, when researching this, I found the following link:

https://pmc.ncbi.nlm.nih.gov/articles/PMC7475640/#:~:text=Survival%20based%20on%20treatment%20modality,0.905;%20P=0.004).

This is from the US Government's National Library of Medicine, a part of their National Institute of Health, which I grade as more knowledgeable than Fred down the pub.

I have no medical qualification, and do not understand quite a bit of the detail here, but these paragraph's caught my eye:

"Survival based on treatment modality

In the surgery group, prostate cancer was the main cause of death in 23 patients (1.0%), whereas 142 patients died of other causes (5.9%). The 5- and 10-year CSS were 99.6 and 98.4%, respectively, and the 5- and 10-year OS were 96.8 and 89.6%, respectively.

In the radiotherapy group, there were 20 deaths due to prostate cancer (0.8%), compared to 163 patients (6.8%) who died of other causes. The 5-year CSS was 99.8%, and the 10-year CSS was 98.1%. The 5- and 10-year OS were 97.2 and 84.3%, respectively."

I separated the quote into 2 paragraphs so that I could more easily see the figures. CSS seems to mean "Cancer Specific Survival" - you are perfectly entitled to croak from something else*. You will see immediately that the figures are almost exactly the same.

For me, then, the question revolved around the side effects. Again, for me, I would have chosen radiotherapy in the end even if I had been offered surgery.

From all the checking I could do, these figures appear correct.

Two of the other members of this forum, Millibob  and Alwayshope have much more experience at this, and will be likely to add their own thoughts.

I really hope I am right.

Steve

* I suspect that my own driving will get me

Hi Edz

I must admit I would be concerned if I was told that surgery was the only option to get rid of the cancer and it's only a T2.

Radiotherapy is Def another option unless your urinary problem could cause issues.

Your stats are low so u have time, either consider changing hospital or getting a second opinion privately.

I get the feeling that you're not that keen on surgery?

Also see what others say

Best wishes 

Steve 

Good Evening Edz 

Another warm welcome to the Macmillan Online community - although I am sorry to find you joining our "exclusive" club! I am Brian one of the Community Champions on the group and yes, I have Prostate Cancer.

Your question has been asked by many and as we are all different I don't have a standard answer BUT with the information you have given us you will find yourself on a "curative pathway", the choice of which is yours.

My standard advice is to get a pen and paper (I am old world) and write down the pros and cons of the treatments available to you and how the treatments and side effects would affect YOU. Use trusted sources for your information, Macmillan, Prostate Cancer UK, Cancer Research UK and members of this Community (not Dr Google!).

Remembering we are not medically qualified I would suggest you could have - Surgery to Remove, Radiotherapy, Radiotherapy and Hormone Therapy and Brachytherapy. The 4 routes mentioned in your post:

Edz said:

(HIFU/cryotherapy/NanoKnife/proton

are only available at at few locations in the UK or you can pay private for them.

To start you off here's our guides to Prostate Surgery, Radiotherapy and Hormone Therapy and Radiotherapy and Brachytherapy

If you click on Community member's names or avatar's you can read their profiles where they have detailed their personal journey.

I do hope the above helps. Feel free to ask any questions  - nothing is too trivial. 

Best wishes - Brian.

Good evening Steve mstev2 and welcome Edz . Steve, there is a more up to date article on overall survival but this is only one element in deciding what treatment might be most suitable. Have a look at 

https://www.nejm.org/doi/full/10.1056/NEJMoa2214122#:~:text=(Table%20S5).-,Primary%20Outcome,Table%201%20and%20Figure%202A).

There is a cautionary note at the end saying that treatments and more importantly diagnosis have improved considerably over recent years.

I think more emphasis should be placed on short and long term side effects of the different treatments and PCUK have produced an informative document which summarises these. In particular look at the Treatment Pathway narrative in section 2.

https://prostatecanceruk.org/about-us/projects/best-practice-pathway/

In this document late risks of surgery are quoted as.....

Assuming there are no significant perioperative complications, urinary incontinence and erectile dysfunction
represent the two main problems faced by men after radical prostatectomy.
Urinary incontinence is present immediately on catheter removal and is at its worst in the first two months
after radical prostatectomy, followed by gradual improvement over time. Pelvic floor exercises are thought to
be important in speeding up continence recovery after radical prostatectomy30, although there is limited
evidence to support improved incontinence outcomes in men who begin pelvic floor muscle strengthening
prior to prostatectomy. Nevertheless, teaching men the correct technique of pelvic floor exercises prior to
surgery can help them to understand the aims of the exercise and assist in functional use of the pelvic floor
area.
Erectile dysfunction can affect as many as 80% of men following a prostatectomy31, with age, pre-operative
erectile function and constitutional risk factors, such as diabetes, smoking and heart disease as the key
predictors for this side-effect. It is usually within the first few months following surgery that the loss of
spontaneous erections and subsequent damage to cavernous tissue through lack of oxygenation to the
tissue occur32
.
Where possible, nerve-sparing prostatectomy should be used to maximise the chance of preserving erectile
function.
It is important to discuss the full impact of surgery with men and assess their pre-surgical baseline function
along with co-morbidities, medications and lifestyle to determine how this may affect current sexual function
and likely post-operative penile rehabilitation in order to successfully manage the patient’s (and partner’s)
expectations and recovery goals32.

A similar analysis has been given for each of the different treatments.

I know you have said you don't want internet links but these are the only way you can get comparative information.

To answer your question about having to make an immediate decision when you see the oncologist - no, you should ask to speak to a surgeon and to a specialist in Brachytherapy and Radiotherapy so that you can make an informed decision. The thing to remember though is that each of the experts tend to promote their own specialty.

Hi Edz , firstly welcome to our club, none of us are medically trained but we have a depth of knowledge from a patient viewpoint that is second to none.  At your stage, you have time to make an informed decision and I would strongly suggest that you don’t just go on Dr Google but look for trusted sources from this site, MacMillan or PCUK.  The guys and girls on this site can help you and you have already been given some great advice.  Focus on the fact that you have curable cancer.

So, what are your options?  To be told surgery is the only way seems very odd, unless there are other conditions you have that exclude a range of options.  Put simply, I would personally look to explore Active Surveillance, Brachytherapy, Radiotherapy and Surgery (in no particular order).  Unless your specialist can give you reasons not to look at alternatives I would ask for a second opinion.  Please come back with any questions.  David

Thanks for everyone’s input, advice, guidance and especially the internet links, very informative.

I also feel a lot better regarding my appointment with the urologist in a couple of days, I feel some pressure lifted.

It just seemed at the time, surgery was the recommended path, but I had just been told I had cancer 10 minutes previously, so maybe I was just not quite compos mentis at the time. I do remember though being told, an active treatment, should be my only route, not monitoring, but when you read the literature provided active monitoring seems a possible choice. Maybe they did see something else and I missed the information, which I will be sure to ask. I also remember, surgery being recommended due to my age and if there is recurrence of cancer symptoms in later life, surgery after radiotherapy was not easy or possible?

From the literature provided, choosing active monitoring as a path seems dependent on how aggressive the cancer is, I don’t remember being told that, so am again unsure and will ask.

Anyway, thanks again for everyone’s input, very reassuring and informative, its great to have a platform where people can share their thoughts and fears, and get advice, support and guidance from those who gone through the same stuff or followed similar paths.

Cheers Edz

Sorry to hear that, but as you say, you couldn't have come to a better place

Hello Edz 

Edz said:

surgery after radiotherapy was not easy or possible?

You are right, it's not normally done - but it can be.

You are at that point where you need to make a choice. My mantra (not Macmillan's as we can't give that advice!) is the younger you are, the fitter you are to fight this. It's not going away, so to me AS is a no. Let's get it sorted, but the treatment route is a personal choice which you have (I didn't!) so it's "pros and cons" as to how each treatment route affects you.

Ask away - we can give you the answers from personal experience - but only YOU can decide.

Best wishes - Brian.

Hi Edz

I was in the same position as you a few months ago with a similar profile.  You will not need to make a quick decision about which treatment route to take.  The correct treatment option is whatever is right for you and you can afford to take some time, read around, ask questions etc. before making a choice. The more knowledge you have when you meet the specialists offering the different treatment pathways the easier it is to know which questions you need to ask. As many others will attest once you have a plan in place you will feel happier and more in control.

I opted for nerve sparing surgery because I wanted to get things over and done with as quickly as possible and didn't like the idea of years on hormone therapy.  Had the op a week ago (which wasn't as bad as I expected) so I have no idea yet how well I will recover but I am feeling optimistic.  A friend of mine went down the radiotherapy route and has been recently told he is in remission with just a couple of years of hormone therapy ahead.  He is also feeling optimistic.

Good luck with what lies ahead.  You have made a good start by joining this forum.

All the best

Dave