People & Lifestyle story, March 2006
| WHAT WOULD YOU
DO NEXT?
Prostate cancer - the journey so far By: Stephen Barton |
As I told my story to a weary but still attentive Professor Kirby on the plane back from the Hike for Hope in March, he suggested I write it up for the Prostate Research Campaign UK newsletter, UPDATE and this website. “Who knows?” he said, “You might get some responses.” So, back to December 2002.
A Christmas surprise: PSA 46.8. But what did this mean? The doctor who conducted the medical examination (prior to intended work overseas) sent the lab report with recommendation I see a urologist. I was 52, in very good health, and it took two months before I could be persuaded this was unlikely to be some mistake or mere infection.
So in February 2003, back at the Queen Elizabeth Hospital in Birmingham, I found I had a T3b cancer with a Gleason score of 4+5. (For several weeks I thought it was only moderate, though the consultant had said four to five; and so I learned the need to insist on written reports of everything.) I asked if it was a matter of cure or control: the latter, they said.
Gone too far for surgery, they said (you must have had this for years), so over to the oncologist via bone and MRI scans, which thankfully held no further surprises. And on to Casodex and the opportunity to learn something of what it’s like to live with breasts (the closing door just catching them, the wobble on the stairs). Then, a few months later, to lie corpse-like in the radiotherapy room each weekday morning for four weeks and 55 greys of radiation. At least they listened to my cry: no more Sinatra, please!
PSA descended to a happy 0.12, but was accompanied by liver ASTs rising to the high 70s. I didn’t need the lab result to tell me the liver was not happy. I was losing a pound in weight a week, unable to digest anything at all challenging. We found I have Gilbert’s Syndrome, but I came off the Casodex anyway.
Liver was happier, ASTs down, but, of course, up went the PSA, at first hovering around 1.5 for most of 2004, rising to around 3 by mid-2005, by which time I was getting anxious, and the consultants were offering a bewildering array of options: cryosurgery, HIFU, salvage prostatectomy, Zoladex. I couldn’t handle it, took time off work (as NHS chaplain) and took refuge with a psychotherapist to handle anger and confusion.
It seemed to me that the cancer might well have spread, and that there would be little point attacking (as I saw it) the poor prostate if there were disease elsewhere. From the PCRI in Florida I found out about Prof Jelle Barentzs and the Sinerem MRI scan to detect clinically occult cancer cells in lymph nodes. And by the end of August 2005 I had his conclusion that there is one definitely metastatic lymph node in the external iliac region - just outside the area irradiated two years previously. An ordinary MRI confirmed residual (now T2b) tumour in the prostate.
Now what to do? I was back at work but in no psychological state for the open surgery proposed to remove the lymph node, and as the PSA rose to nearly 5 I chose to go on to Zoladex to buy myself some safety and some time. That started in December 2005.
Meanwhile, from the Chairman of the Prostate Cancer Charity, no less, I had learned of the work of a Harley Street naturopath. In March 2006 I went to see him and am in the middle of a whole load of expensive tests I don’t really understand, which will help him find out how my body works and, in particular the immune system. I await his conclusions and directions.
The oncologist is highly sceptical of the naturopath’s theories, but still happy for me to follow this path, as options regarding the various interventions proposed last year will still remain. So, at the end of May I shall stop the Zoladex and we shall monitor PSA for six months, or for as long as I feel comfortable. I went to Harley Street with the aim of finding a way of controlling the cancer, of living with it, but the doctor speaks of cure, of getting rid of it.
I have made major changes in my life. Unable to do justice both to my work and to my body, I have now retired on the grounds of ill health from the NHS and have not worked since the end of January. It is wonderful to be free of other people’s distress. (In preparing for the Hike for Hope I did lots of walking in local hills and many people said Hello to me, but not one took me aside to tell me how crap their life is!). I seek a new direction in life, and am finding Lawrence LeShan’s ’Cancer as a Turning Point’ very helpful. My next project is a 10-day Buddhist retreat, learning meditation like never before. (Roger Kirby asked about diet: having dipped into Jane Plant in Waterstones, I gave up dairy products last summer.)
On the plane, Roger’s response was to propose re-scan, laparoscopic removal of lymph nodes, followed by (if positive) radiotherapy, and then HIFU or cryosurgery to the residual tumour in the prostate. Why not get rid of it, he said, and get on with your life?
Now I am in a situation where my oncologist and I were thinking no longer in terms of cure, but control. And I have a naturopath and a urology surgeon both speaking of possible cure. This brings me up against a fascinating psychological question: have I been sleeping with the enemy? This cancer has brought me many benefits. It’s good to know you are loved, and people tend to tell you more when you have the big C. A change in my work-life was probably overdue and I’d often hoped for early retirement: now I had a reason for taking it. The notion of being more pro-active, of aiming to getting rid of the tumours comes, strangely, as a challenge.
So I’m rising to it, if gradually. I would like to get rid and move on; but how and in which direction? For now, I am content with this year’s plan of finding out more about my immune system and how best to support it. But what would be the best way of ridding my body of this intruder? I remain very wary of extreme measures like major surgery. A laparoscopic intervention to the lymph nodes might be tolerable. I’m less sure what to do for the prostate gland, fearful of morbidity associated with cryosurgery or HIFU.
I am, apart from the cancer, in very good health. The Zoladex does weary me at times, and I walked most of the Hike for Hope towards the rear of the group, but I did it and totally loved it.
What would you do next?
Stephen Barton
27 March 2006