In the short time I've been here I've read numerous posts which suggest that patients and their partners were actively engaged in the treatment decision process, and given a choice of things to try. "We are still deciding which...", "We have until Friday to decide", etc.
While I am of course grateful to be receiving treatment, and to live in a country where this is even possible, choice hasn't been my experience.
In A&E, where I was diagnosed with Stage 4 after scans, I was double injected by a urology team who simply said "we're just going to start your cancer treament...". Nobody told me this was effectively chemical castration. Being Stage 4 something had to begin asap, but everything else was left for a month later, which should have allowed time for me to be allowed to engage, and to become involved in the decision process.
I had surgery on my spine and radiotherapy was arranged for a month later, without me seeing an oncologist, and I only got to see them, unexpectedly, at the CT planning scan, with 5 palliative fractions on the surgical site starting next day, so there wasn't any discussion about side-effects, that only came in the first session, and the onco handed me a glossy booklet for a drug, told I would start on that next month, which, when I read it, included a set of side-effects including 1-in-10 having a stroke, and me living alone.
Subsequently, at the first clinic appointment proper, where even the appointment letter advised to get any questions ready you may have, and there alone, I asked about early chemo, having read of a 2012 trial with 900 men who saw their lives extended by an average 17 months, but my question was shot down with a remark about me challenging the patient-doctor working relationship. A similar thing happened at the last clinic.
Having worked in the NHS many years ago I am aware that some consultants see themselves as Gods and their staff revolve around them as such, though that was more the surgeons, but I neither believe in Gods above or here on Earth and am by definition terminal so it seems odd to expect me to follow in this level of worship and not dare ask about different treatment options.
What has been your experience with your oncologist, have you been actively involved in the choice, given a range of possible options so you can assess the side-effects, or was everything decided for you?
Hi Steve
Like you wasn't given a choice as they thought from my MRI the little buggers had gone walkabout - 9 months down the line the oncologist decided they hadn't.
Had I had the choice of treatments I would have gone down the route I am on now!
I am fully aware the side effects are very rarely discussed - I am married to a nurse and knew what was coming every step of the way so in a way I was lucky.
You take care Steve.
Best wishes
Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi Seamus
That's something else you have reminded me about diagnosis and treatment.
On biopsy 12/21 I was a Gleason 7 (3+4) - when I had my TURP operation 11/22 and my "chips" were measured I had become a Gleason 9 (5+4). Now a question no one has answered - was it a mis-diagnosis or did the cancer become more aggressive in the 11 month gap?
Anyone wish to throw their hat in the ring?
Best wishes
Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Interesting - It looks like if you leave it without doing anything it can become more aggressive - BUT I was on HT form 01/22.
Sorry Northers Steve - I didn't want to pinch your thread!!
Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi Honey2
It's always made me wonder that one. However as long as the HT and RT are doing the business and I feel great with a low PSA - it's happy days.
It's always nice to speak to a member or member's wife of our "exclusive 9 club" especially ones that are doing well. I am very pleased for you with an undetectable PSA. I have my first 6 monthly PSA after RT in 2 weeks time and am hoping for less than my last at 0.576.
Best Wishes
Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
