Treatment Option Advice

User

Posted 24 Jan 2016 at 15:29

Based entirely on my own experience, I'm always surprised by the amount of enquirers asking for treatment advice especially when the cancer is localised.

Although the ultimate decision regarding my treatment was mine, it was presented to me in a way that prevented any agonising over treatment options. My Oncologist and McMillan Nurse were quiet clear about the best course of action I should take. It was really easy for me to decide and for what it's worth, had I decided on any of the other treatment options, I would have felt very foolish had they not worked.

Perhaps others sufferers didn't receive such assertive but constructive advice, but I am always surprised by the amount of advice being sought about treatment options, just an observation based on my own experience!

User

Posted 24 Jan 2016 at 22:14

Hi Pabilto, welcome to this site where you will get good advice and information if you need it.

In answer to your question, I can only say that exactly the same happened to me and was not really given a choice but there was an assumption that there was only one way to go. HT and RT with not much of an explanation, it was only at a later stage that I found out more information about treatment generally. At the time of diagnosis I had done no research as to what to ask or how to respond so accepted the route that was decided.

As it happens I am satisfied with the way forward but can imagine if my PCa was at a different stage and had not been offered a choice or explanation or time to think then I may have felt aggrieved.

Maybe it depends on whether there is a choice or not. I now know that with my PCa it was the only way to go and am going with the flow, so to speak.

I can understand others being in a quandary if they do not understand what is happening to them and some also freak at the "c" word so go to pieces and not take in all the info anyway.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 25 Jan 2016 at 09:00

In the beginning the overwhelming feeling can be to get on with it and get the cancer out. Later down the track when one of the alternatives has to be done anyway one probably questions their choice. My OH had an open RP and his two post operative n PSA results were 0.01 so I became complacent and thought he would go on this way towards a total cure. However, at the 9 month PSA test ,post operation,his psa has gone up a little. So the should have, could haves start to niggle . Lucky if you can be totally confident about a decision but only time can really tell. We all try to make the best decsion for ourselves, family and situation at the time. Georgina

User

Posted 25 Jan 2016 at 09:29

I was rather naive about treatments that were available until I joined this site but by then I had started HT and RT.

I spoke to someone about this at the B2PCA get together in December and they said what I was given was because it was the right option for me, a light came on then and I understood why and what path I was on.

Arthur

User

Posted 25 Jan 2016 at 10:49

My own experience is quite different from Pablito's. On diagnosis I was told that 3 treatment pathways were open to me. Surgery, Brachtherapy (HDR not seeds), and EBRT. On the day the MacMillan nurse said all 3 had pretty similar success rates. I was given a lot of material to read.

Fast forward to my first meeting with the inter disciplinary team and I spoke to the surgeon first, he said I was an ideal candidate for his specialism (Da Vinci) and gave me lots of info about incontinence etc etc. I then spoke to the Oncologist who explained the Brachytherapy and EBRT options.

Nobody "pushed" their specialism except to say that treatment outcomes were pretty similar in terms of cure. It was then left to me to decide.

Surely that is as it should be even though the decision is very far from easy.

User

Posted 25 Jan 2016 at 11:14

I must admit, immediately after my diagnosis I found it strange that I was presented with a choice of treatments.

Like others, I expected to be 'told' what was going to happen.

It was only when I went away and had time to do some research that I realised I was in a rather fortunate position compared to some who had less choice in the matter due to their advanced diagnosis...

I have to say that potential side effects from the various treatments were rather 'fudged over' and a rather rosy picture was painted instead.

I had no hesitation in choosing surgery, and although I still suffer with side effects have no regrets about the path I chose, as I know it was the right one for me as an individual.

When I spoke to my consultant after the op he told me that they try to 'guide' you towards the preferred option of the MDT team, taking in to account your personality, and how you deal with things in general. They wouldn't allow you to make a choice that clearly was not appropriate for you.
In my case no guidance was necessary and they have reassured me that I made the right choice ( for me )

Luther

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User

Posted 24 Jan 2016 at 22:14

Hi Pabilto, welcome to this site where you will get good advice and information if you need it.

As it happens I am satisfied with the way forward but can imagine if my PCa was at a different stage and had not been offered a choice or explanation or time to think then I may have felt aggrieved.

Maybe it depends on whether there is a choice or not. I now know that with my PCa it was the only way to go and am going with the flow, so to speak.

I can understand others being in a quandary if they do not understand what is happening to them and some also freak at the "c" word so go to pieces and not take in all the info anyway.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 24 Jan 2016 at 23:09

Good for you mate...but unfortunatly the reality for many men is that quite a lot of factors have to be weighed up when making the decision about treatment eg side effects...emotional and psychological issues.
I saw three surgeons and the oncologist twice as I had to be sure the decision was right for me and my family.
I had to have follow up RT....so did I make the right or wrong decision...who knows...

Bri

User

Posted 25 Jan 2016 at 09:00

User

Posted 25 Jan 2016 at 09:29

I was rather naive about treatments that were available until I joined this site but by then I had started HT and RT.

Arthur

User

Posted 25 Jan 2016 at 10:49

Nobody "pushed" their specialism except to say that treatment outcomes were pretty similar in terms of cure. It was then left to me to decide.

Surely that is as it should be even though the decision is very far from easy.

User

Posted 25 Jan 2016 at 11:14

User

Posted 25 Jan 2016 at 12:06

Thanks everyone for your responses.

It is certainly a mixed bag of experiences.

User

Posted 25 Jan 2016 at 14:19

I agree with Luther that, in many ways, you are fortunate if you have a range of options and this is mostly the case with locally confined Pca.

For me, making a decision was highly complex. This is a rough guide as to why I chose the route I have chosen:

1) Surgery - a big problem for me was the risk of long term urinary incontinence. I was reading about too many people who had this problem for comfort. I also threw into the mix my age - 67 - and felt as you got older it would be more difficult to regain control. In it's favour was no hormone treatment and a "one off" procedure. I reckon if I'd been 10 years younger I might have gone for it.
2) High Dose Brachytherapy with ERBT top up. The problems with urinary incontinence, although not unknown, were pretty small. A key factor was the fact that my older brother had gone down this route pretty successfully. Downsides were the need for hormone treatment and several visits to hospital. Another was the issue of bowel problems which were more pronounced than for surgery.
3) ERBT. 37 trips over 7 to 8 weeks and a 70 mile round trip at that. Bowel problems an issue as well. I dismissed this option without too much thought.

Having made the choice, 2 further complications arose:

1) I started reading, on these threads, about fecal incontinence after radiotherapy. In fact I was coming across this too often for peace of mind.
2) I then read about the new form of ERBT - 20 sessions but at a higher dose targetted at the tumour using gold markers. I may now be offered this and I am seeing my onco next week (she in fact was a key figure in the clinical trial of this procedure).

So what I hope this illustrates is the complexity behind your choice and the huge amount of information there is to take in. In terms of being given a steer I do now recall that the MacMillan nurse who I spoke to after the diagnosis did say that you have to decide what you can live with and my fear of long term urinary incontinence swung the day - just.

User

Posted 26 Jan 2016 at 00:49

Pete 48,

The 20 fractions each of higher dose RT has obvious advantages over the widely adopted 37 fractions to both patients and the treating hospitals in terms of attendance, setting up and saving linac time. It is said that the results of both regimes are similarly effective. However, it remains to be established how the hypofractionated treatment will compare with the standard treatment in the long term particularly as regards late bowel problems, which can occur 10 or more years post treatment with RT.

As regards treatment, where different options are open to a patient, it is more usual for surgery to be recommended for younger men for whom this procedure would be easier and avoid the long term possibility of resultant long term bowel damage. Surgery can also be augmented with RT if necessary much more easily than the other way round. But for older men or where it is doubtful surgery will do the job, it is more likely that RT will be suggested. This is a generalization as there are a number of reasons why some younger men opt for RT and older ones for surgery. Advanced ways of administering RT, (not just by fewer fractions of higher dose) and other possibilities such as HIFU, Cryotherapy, Proton Beam and perhaps in due course Nanoknife IRE, may result in fewer men opting for surgery. It is going to become increasingly difficult in many cases for consultants to make a treatment recommendation and indeed some will not do so at present. Strong patient views about side effects and the implications of possible further treatment in due course have also to be considered. But historically we were brought up to believe ' Doctor knows best' and certainly some men would rather just be told they should have xyz treatment. It also has to be remembered that even for those Consultants who might know of other treatments, if their hospitals do not have them, it is unlikely that the Consultants will say "you would be a good candidate for such an such treatment but we don't have it here so suggest you have it elsewhere." So rather more to a treatment decision for a man who is prepared to research, weigh up possibilities and make his own judgement.

Barry

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