Choosing treatment, it is difficult to give really INFORMED consent

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User

Posted 05 Dec 2016 at 17:21

When I went to my outpatient appointment to discuss my prostate biopsy results I was still hoping not to have prostate cancer. Then during the course of just one consultation I was told that I had cancer (shock), that the cancer grade was Gleason 7 (4+3 on one side, 3+4 on the other), that cancer had been found in 11 out of 42 biopsy cores with the overall core volume with tumour being 10%, that given my history of ulcerative colitis surgery would be preferable to radiotherapy, that consideration should be given to removing at least one nerve bundle (though it can worsen erectile function) and to do lymph node dissection (though it can increase the risk of side effects) and that surgery could be arranged on a proposed date 4 weeks later. There was a lot to take on, including a blow on morale.

Have others found it difficult to give INFORMED consent for treatment? As the diagnostic process s led by urologists, prostatectomy is frequently recommended, and other options are glossed over. And there is a finite amount of time in an NHS consultation. Personally I would have preferred to have the biopsy histology results to be sent to me (together with the Prostate cancer UK booklet explaining treatment options) BEFORE the outpatients appointment: I could have organised a better and more appropriate list of questions regarding my treatment and prognosis.

User

Posted 05 Dec 2016 at 22:54

Hi Giuseppe,

I see from your profile that you have had your RP and hope that things are progressing well for you.

It is likely that hospitals will concentrate only on the treatment options they can provide and may also not refer a patient to another hospital because their own commissioning body will not fund a different treatment in another area.

At the meeting when diagnosis and treatment options are discussed, patients generally can go away, consider what they have been told and read up on PCa. (The booklets are basic information and don't provide a patient specific treatment plan). It is rare for a patient to be pressed into making a decision then and there. When a patient has considered what he has been told - (always a good idea to have someone with you to help remember afterwards), read up and done some research, another meeting can be sought by patient to discuss and confirm patient's decision. This is what I did and I have no complaints. However, you are right that it could be helpful to some - particularly those without internet - for them to be sent some booklets on PCa in advance. The only down side I can see to this is that patients may start asking questions about treatments not relevant to them, thereby taking up hard pressed consultant's time unproductively.

Barry

User

Posted 05 Dec 2016 at 23:02

Hi,

I was told my results of the biopsy but did not get treatment options until the results of my bone scan and MRI scan had been seen by a multidisciplinary team. The outcome of that meeting was that a nurse told me by phone that all options were available to me except brachi therapy. I next had an appointment with a surgeon then a oncologist and was able to ask about the effects of the different treatments. I then felt able to make an informed choice. In reality I had already made my mind up but attended all the appointments to ensure I understood all the implications. I then met another surgeon because the first surgeon didn't do key hole and he explained again what would happen and the risks.

I felt my decision was made with as much information as I needed.

Good luck with your choice but don't be afraid to ask questions or feel pressured into something that you don't feel fully informed about.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 05 Dec 2016 at 23:57

While it may have suited you Giuseppe, I think that many people would find it extremely distressing to receive a letter telling them they have cancer and to then have to wait for an appointment to be able to discuss it.

Very few hospitals still have the old system where urologists lead on this stuff - most will send the biopsy results, MRI etc to the MDT for discussion and then the urologist or a specialist nurse tells the patient what the MDT felt might be available and appropriate to that patient.

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

User

Posted 06 Dec 2016 at 14:13

Thank you for the comments. I had a radical prostatectomy 4 weeks after that appointment. I am not entirely sure it was the right choice. If I had been given the biopsy histology report BEFORE that outpatient appointment (when I was given the result and accepted the prostatectomy) I would have asked more questions. The Biopsy report suggested there was "possible" extra-capsular extension and, sure enough, histology on the prostatectomy specimen confirmed there was extracapsular extension up to the resection margin. I now have a high relapse risk and may end up needing salvage radiotherapy. I now wonder whether I should have asked more about radiotherapy as the primary treatment option.

I was not given the option of speaking to a radiotherapist, nor I am aware of any MDT discussion.

My question, though, was generic and beyond my case: informed consent is important but seems difficult to achieve.

I just feel that outpatients meetings are like executive boards: very important decisions are taken (about my health) and I am invited to attend without any previous agenda or documents distributed to me. When you go there you find what the agenda is and what is proposed, but that puts me at a disadvantage (too late for reading, searching for publications or even sounding off for different opinions). I think there are disadvantages from the one-stop process (diagnosis given and treatment agreed) in one session, at least for patients who would like to be involved in the treatment choice.

User

Posted 06 Dec 2016 at 18:59

I can only assume your timescale caused compression of informed consent information gathering in some ways. I understand the points you make, could you have asked to be informed by phone ? ie I can not fault NHS, from dx to op was 3 months. This period allowed exactly what you may have missed. Did I actually control the pace, who knows.

In the end it came down to 2 primary options RT or RP. So the fork in the road eh ? Which one do you take. I have all the info I needed and access to MDT. Maybe luck, how you engage into the system. Maybe 'odd' for me I had near zero** GP involvement and still don't .

** ie apart from initial Biopsy referral and subsequent PSA tests I organise with phlebotomist / nurse myself. The 20+ years where me, wife and all our family had same GP, have lost since disappeared into the ether. Progress eh ?

I'm not sure you have made the incorrect decision, at all ? surely salvage RT will be offered at appropriate time. ie post 2 months PSA value and then 6 months will give very accurate indication of what is going on. I had option to take part in RADICALS trial which after gathering all information and interview I declined

Gordon

Edited by member 06 Dec 2016 at 19:07 | Reason: Not specified

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