Originally Posted by: Online Community MemberDevonlad, are you in the UK or overseas? It is great to see your supportive posts but there are a couple of points that perhaps need clarifying.
It is very important not to give new members confusing messages so my apologies to Gil in advance. Watchful waiting should not be confused with active surveillance - WW is taking no action except to keep an eye on PSA and is rarely used these days except perhaps where the man has many other medical problems which are more pressing, or has refused any kind of intervention. AS done correctly includes a timetabled monitoring programme including regular PSA test, at least annual DRE and annuaul MRI scan.
Most people see a urologist at first and may also be seen by an oncologist. However, in many areas the man's case is discussed by a multidisciplinary team that includes both specialisms and the man only sees an oncologist if they are interested in radiotherapy or have been diagnosed late.
It is possible for G6 to have spread so we should always wait for the full results to be in before jumping to conclusions. I am sure Gil that all will be well but they have given you those scans to be on the safe side. Finally, it is rare to find cancer specialists who will talk of a so-called cure ... the correct term is remission which is used to describe men who have gone 10 years post-treatment without any sign of recurrence. That is what curative treatments are aiming to achieve.
Lyn – I am in the UK and apologies that I got my Watchful Waiting and Active Surveillance mixed up, I meant Active Surveillance of course.
The process that you describe that most men go through is as it was with me. I first saw a Urology Specialist Registrar who gave me a DRE, arranged for another PSA test, biopsy and MRI scan. I then saw a Locum Consultant Urologist who told me at ¼ past 8 on a dark evening that I had cancer Gleason 3+4 on one side of my prostate. He arranged for me to have an NM Bone whole body scan and an NMR Scan. I then saw the Consultant Urological Surgeon. One of the first things he said to me is that he understood that I had agreed to a robotically assisted laparoscopic prostatectomy to which I had to correct him in that nobody up to that point had discussed any possible treatment options to me! He then briefly explained the benefits of robotic radical prostatectomy over radiation treatment (no explanation of the various forms of radiation treatment available) and that was it …… I was apparently then ‘signed up’ for robotic radical prostatectomy as confirmed in a letter that he sent to my doctor and copied to me. He did mention at the consultation that my results had been considered at a multidisciplinary team meeting and that RP was agreed by that team as the best option for me.
I found myself at a support group later that same week and the same consultant was quest speaker at the meeting. One thing he said stuck in my mind, he said. “several years ago we used to consider 20 people in a morning at a multidisciplinary team meeting but now we have to evaluate 60”. I did a quick calculation and if a morning means say 4 hours from 9am until 1pm without any comfort breaks or time off for coffee then the average time that each patient was considered would have been 4 minutes!
It is then that I decided to research the subject inside out and explore what I considered to be the best option for me taking into account the treatment options and their side effects, my health and previous medical history and my private and working life (I am self-employed so long periods off work are not good). I liked the look of LD Brachytherapy but can’t say I found it easy to see an Oncologist to discuss its suitability. However I sent an email to an Honorary Professor of Urology who specialises in Prostate Cancer giving all the details currently known about my cancer and was pleasantly surprised when he telephoned me and in the brief discussion we had he not only told me that on the current evidence I am a candidate for LD Brachytherapy and furthermore it was probably the best option for me.
I then asked my doctor to refer me to a clinical oncologist at my local hospital and when I saw him he confirmed that LD Brachytherapy was a good option for me but they only performed HD Brachytherapy at that particular hospital. He suggested I attend another hospital in the same county but I asked to be referred to the professor mentioned above (who is a long way from where I live!). The long and short of it is that he referred me back to my doctor who then referred me, at my request, to the professor and that’s where I am scheduled to go for a consultation.
So my point is, as suggested to Gil, is that you don’t have to accept the treatment you are recommended and that treatment may be influenced by what they provide in the hospital you are referred to (usually the one nearest to you). Also, if you are not sure of what is going on then ask, ask and ask again if need be. It’s your life, it’s your body and it’s your NHS.
Regarding cure and treatment what I highlighted is exactly how it was put to me by the consultant. If it’s confined he said we can cure you, if it’s not we will treat the cancer to slow its growth down and treat the symptoms. Yes, naturally, we know that if our PSA falls to an insignificant amount it doesn’t mean that the cancer can’t return at a later date or indeed with radiation treatment another type of cancer can develop in other organs later down the line but if it returns there are other ways of dealing with it and in patients that undergo radiation treatment the number of patients that develop ‘other cancers’ are measurable but pretty small.
It has also been really useful to read the NICE Guidelines on prostate cancer and I recommend them to anyone who has the disease as they give you a clue to what you should expect re. diagnosis, advice, treatment etc. Clause 1.3.5 says ‘Given the range of treatment modalities and their serious side effects, men with prostate cancer who are candidates for radical treatment should have the opportunity to discuss their treatment options with a specialist surgical oncologist and a specialist clinical oncologist’, hence my reference to what resources a patient has at their disposal rather than what they are necessarily offered and what decisions are made regarding their treatment ‘behind the scenes’.
Finally - please don’t get me wrong Lyn, I am sure all the folk that have advised me, whether professional or not, have had my best interests at heart. However – the NHS isn’t limitless in its resources and the treatment one is offered can relate to what is available close to home whether it is the ideal treatment for oneself or not.
Again – I must say it, what a great site. It’s been very comforting for me and I am sure it could be for you Gil.
dl