Wednesday, September 15, 2010

Recovering from surgery

Entry for 14 September 2010:


Last January, I was diagnosed with prostate cancer, apparently early stage. I did not record here my experiences during this process; I chose not to circulate them in this forum. Why? There were many reasons, but the principal were the uncertainty; my own discomfort and embarrassment (it somehow felt like a personal failing); and because I didn't want this to turn into a cancer blog. Thus, I chose not to reveal this information here. However, because this has been the major process going on in my life throughout this time, it has had the unwanted effect of pushing this blog to the side. In this entry I attempt to remedy this situation by offering a summary of my process over this time.


In the USA, men are routinely screened for elevated PSA from age 50 onwards, and I'd been tracked for slightly elevated PSA scores for the 6 years before we moved here. PSA screening isn't done routinely here, because of its high false positive rate and the resulting risk of over-diagnosis and unnecessary treatment. Now my elevated PSA (7.8) had been followed by two biopsies, the second of which identified early stage prostate cancer in a small part of my prostate. What was I to do?


There is currently a controversy -- on both sides of the Atlantic -- about what if anything to do about early stage prostate cancer. Here in the UK, NICE guidelines advocate Active Surveillance, essentially continued testing until it progresses to a more advanced stage, while some in the US are beginning to question indiscriminate prostatectomies for this stage of prostate cancer, because a large majority of men diagnosed with it die of something else first ("die with it, not of it").


What I did was to read a lot studies. It turns out the prostate cancer outcome literature is far messier than the psychotherapy outcome literature, because the cancer generally grows so slowly that 15-20 year follow-up studies are needed. Also, it turns out that most early stage prostate cancer is diagnosed in men 75+ or older, only 5% of whom will die of it. Eventually, I found a study of a European study tracking men of my age with my stage of prostate cancer for 8 years: I could see that death from prostate cancer leveled off a year or two after surgery, but with Active Surveillance the death rate kept trending upward in a shallow but straight line. Extrapolating from these data and given my life expectancy (I was 59, otherwise healthy, and could expect to live at least another 20 years), there was a better than even chance that this would kill me before something else did. Furthermore, I was more likely to be able to make a full recovery, with less chance of recurrence, if I had the surgery now rather later. I decided to go for it, in defiance of the NICE guidelines.


The issue of what kind of treatment was also problematic, and has odd parallels to the psychotherapy outcome literature: There are several competing treatments, with no compelling arguments or evidence to support any particular one, but a lot of strong opinions. Paralleling psychotherapy research, however, the crucial variable appears to be skill of the surgeon, indexed in this case by their having carried out whatever procedure it was hundreds of times previously. The person of the surgeon is more important than the procedure itself. On this basis, I decided to stay in Scotland and to receive an older form of the surgery at the hands of a highly skilled surgeon, rather than attempt to fly back to the North America for a more modern laproscopic-robotic surgery.


More importantly, as I delved into all this, I learned (a) that prostate cancer is now considered by key researchers like Neil Fleshner and his team at the University of Toronto to be primarily a nutritional/lifestyle illness, and (b) that there is a pretty good chance that the cancer had already spread to other parts of my body micro-metastically. This meant that surgery, of whatever kind, wasn't going to be enough; I would have to change my lifestyle: I switched to a mostly vegetarian diet (the exceptions being fish like salmon and free range, organically grown chicken); began making sure I got at least 7 hours of sleep each night; went on about 10 micro-nutrients with research evidence supporting their anti-cancer properties; and substantially increased my level of exercise. I also starting drinking alkalinizing water (at the encouragement of my friend Leigh McCullough), and tried in general to reduce the level of stress in my life.


I'd like to say that these measures reversed my prostate cancer and removed the need for surgery, but unfortunately that turned out not to be the case, although further PSA testing clearly indicated that its steady progression was halted and remained steady for the past year after years of steady increase. They did, however, ensure that I was in peak physical condition going into the surgery.


Finally, on the 3rd of September, I had a radical prostatectomy, that is the complete removal of my prostate gland. This is a delicate, painful, major operation: I was under anaesthetic for about 5 hours and hospitalised for 4 days; the catheter will have to be in for 3 weeks, and I won't know for some time after that how much incontinence and impotence I will be left with long term. In addition, although I've been assured that the surgery was successful and appears to have removed all of the cancer, I don't have the pathology results yet. Ultimately, I'm not likely to know for years whether the combination of surgery and life style changes will have prevented a recurrence of this cancer. But in any event, I will have done my best.


So that's the story. I will be off work for at least 4 weeks through the end of September and possibly for much of October. It's my hope to be able to continue regularly to write this blog during this time, but at this point, in the meantime, really my only job is to heal as best I can: Drink a LOT of fluids, to prevent blood clots and to keep my catheter open; to take daily walks around my neighbourhood (for the same reasons); to sleep a lot (8 - 9 hrs / night); and to be at peace. Mostly, I take my days slowly, and listen a lot to my body. This makes it a special, almost holy time, like being on extended spiritual retreat, communing and listening to what my body and spirit are saying. In fact, it is a marvelous gift to be given this time for healing and reflection.

6 comments:

Jeremy said...

Hi Robert - thanks for writing sensitively and clearly about your condition. As you imply to not mention the thing that is on your mind gives it the status of being "warded off" in the interpersonal domain. It isn't as simple as that of course because there are boundaries within that domain. Actually I heard about your prostate cancer a few days ago and so I suppose my first feelings of sadness, shock and so on are less to the fore, but i am suprised that I move straight to the assimilation model - must be contextual.
My other thoughts were about how one carries on (I am in your cohort) containing an inner 19 year old and somehow age takes you by surprise.
I used to seek to improve my mind thinking that my body would look after itself, now like Father William (Lewis Carroll) I am much more at ease with my lack of mental capacity and much more focused on keeping my body going. It is a wonderful indulgence, particularly when you have a superego that has no interest in health so cannot be persecutory.
I have been reading Haruki Murakami (a contemporary of ours) on running, but also about being a certain age. It had many resonances. Well I have never commented on a blog before - so I hope I have abided correctly by blog etiquette. Jeremy

Robert Elliott said...

It's good to hear from you Jeremy. (Though I can't tell if that's Jeremy C or Jeremy S; you are both welcome here.)
Fortunately, I was surrounded by a circle of close friends and family members I could communicate with, as a kind of virtual community; that really helped.
I'm starting to miss my running, so maybe a vicarious experience would help, via Murakami's What I talk about when I talk about running. In case, this is the second recent recommendation for this book I've received. My 19 year old & my 10 year old selves both salute you!

joao said...

Hi Robert!My name is João Brito and i was in level 1 workshop in Lisbon this year. Since june i am visiting your blog looking for your mail (i don´t know why i can´t find it on the top of the page) because i wanted to get some info about EFT level 1 and 2 formation in UK. Like i said, i was in (half) level 1 workshop in Lisbon this year and i become more interested on EFT, so i wanted to get more envolved. Then july i finished my graduation and summer came in and i was always thinking "i´ve to contact Robert Elliot, i´ve to contact Robert Elliot,...". Now the summer is ending and i have to "get back in work" and i open your blog and i read "Recovering from surgery"... automactly i think "it´s not the time to bother Robert with professionl issues..". But at the same time, while i was reading your post about diagnoses, the chances, the treatments, the change of lifestyle, and also another thing very interesting, the change of "mentallifestyle", it reminded me the situation that my father went throught a decade ago. My father was diagnosed with stomach cancer (luckly) in a early stage. My father went through surgery, total stomach removal, and by quimiotheraphy and radiotheraphy. During and after that my father changed forever. All the stressfull life, all the big amount of work, all the problems of familiar issues, all of that ended. Because my father understand that this stressfull things were stealing his life. And now, from my point of view is were the existencial perspective enters. During the hospitalization, my father was confronted with the real notion of dead, and he started to question what is life and how he should live his life. My father decided that he should live with quality of life and also live for his children (because at that time i was only 8 years and my brother 12 years). That´s the existencial lesson in his point of life, when faced with dead, he decided that he was not the same man anymore. He was a new man, with more empowered aims of life. After the radio and quimio, and then the final exams (everything ok), the doctor said to him that we would live more 5 years. It already passed 16 years... and my father still live in good health (of course with some limitation about food and physical efforts). My father is always saying to all people about this situation that "a good surgerion is essencial but it´s all in our mind, the power of our mind is unlimited". So Robert, i´m to young to give you an advice, or to tell you what´s best for you, so i share my fathers story because i fell somehow it links with yours and that could be inspirating for you and to cope also. Really i´m sorry for asking for EFT formation but i didn´t found other way. Thanks for your attention. João Brito (psijoaoluisbrito@gmail.com)

Robert Elliott said...

Thank you for sharing the story of your father, Joao! It's quite inspirational, and I can see that it has had a big impact in your life. I'm sorry that you missed this year's EFT-1 at Strathclyde -- we had 3 Portuguese speakers there -- but there is always next year, probably 30 Aug - 2 Sept 2011. -Robert

joao said...

Next time i´ll have to be more "hawk-eyed"..! Thanks for the attention Robert. Just one more quote from a very acclamed portuguese personallity (António Feio) that died last month in Portugal "Rejoice your life. Don´t let nothing to say or to do." That´s what somehow what i get from the situatiom from my father, and if i can resume in one sentence it would be "The Self is unlimited, much more than we think that it can be". João Brito

Miek said...

Hello Robert,
I'm following your blog since quite a while. Reading this post made me a bit sad. Because I'm sure that a diagnosis of cancer is a shock. To realise that there are cancer cells in your body, is scary, I think. The same for tolerating the uncertainty and being confronted with a disease that kills. However, I think that you did a good thing by informing you very well. And I believe that you made a good decision with going for the radical prostatectomy. I've a medical background and I know that the prognosis is fairly well. But, even then, it's still difficult to bear, I think...
Anyway, thanks for sharing this to us and I wish you all the best!
Sofie