I've had a PSA of around 3.7. for the past 3 years, rising over the past 12 months to 4.1. After a routine DRE (Digital Rectal Examination) a nodule was felt (later deemed benign). Biopsy showed 8 out of 12 samples with cancer (average of 13% volume). Cancer found in both lobes, but, because of Gleason, it's been deemed low-to-moderately aggressive.
Only one tumour was visible on the MRI and no spread to nodes or seminal vesicles, so completely contained (as far as MRIs can be trusted!). Cancer couldn't be felt, but biopsy shows it in both lobes, so I guess that explains the T2c staging.
I'm now going to weigh up the pros and cons of the treatment options available to me, do more research, and take my time coming to a decision.
I feel as though the worst part (at least of this phase of the journey) is now over. Not knowing is definitely the worst, and we can get on with our lives again!
In response to a reminder to let us know what he was doing, David replied:
I'll be talking to Leeds about Brachytherapy this week, and having HIFU snazzy MRI next week - so there'll be more to tell. But there's loads more on the blog!
Had MRI scan at UCLH in London. Report shows 'large volume' of tumour on left gland, with some cancer on right side too.Possible microscopic escape on left, so I now have a 'possible' staging of T3a (I don't know how reliable a 'possible' staging is....) Still no seminal vesicle involvement, but with possible escape they say I should have bone scan.
I was told today that I'm still a candidate for HIFU, but for whole gland treatment. This is a bit of a blow, as the impotence rates - which are very good for hemi-ablation or index lesion, aren't quite so good for full gland. It also may mean that I may not qualify for the clinical trial.
I have meetings next week and a template mapping procedure due at the end of November.
Well, my decision (6 months after initial diagnosis) has been made. My first choice (HIFU) was discarded after a frank and productive consultation with Mark Emberton at UCLH in London. I'm glad I initially pursued UCLH for treatment, not least because their high-def MRI showed a much sharper picture than my initial scan. (Why we continue to scan after a biopsy is beyond me, but there is now government support to trial pre-biopsy MRIs.)
It was clear that the location of the largest tumour (close to the sphincter) makes the risk of side effects with full-gland HIFU, no better than radiation.
My hometown oncology centre, (in Leeds) is about to follow the Canadian model of single-dose HDR (High Dosage Radiation Therapy), followed by IMRT (Intensity Modulated Radiation Therapy) 'lite'. My oncologist (Dr Bottomley) recommended this to 'mop up' any possible extra-capsular spread (MRI showed possibility of microscopic escape). This consists of 15 low dose beams about 2-3 weeks after the initial HDR treatment. I'm currently on low-dose Casodex, prescribed as both a holding-mechanism (my tumour is close to the capsule edge) and to shrink the tumour pre-treatment. I'm not experiencing any side-effects other than sore and lumpy nipples (I'm told both are not uncommon).
I feel happy with my choice. I realise that there have been risks with waiting 8 months between diagnosis and treatment, but there are (in my opinion) bigger risks in rushing into an inappropriate treatment choice.
I will update after treatment. In the meantime, I keep a PCa blog, if anyone is interested in my story.
March 2010 I'm a few days away from the second leg of my 'triple threat' treatment.
I've been on Casodex for the past 3 months. During this period my PSA has dropped from 3.7 to 0.85. I can't say I like it though. I've had breast enlargement and tenderness and noticed my skin has been very sensitive. But it's a small price to pay. I could've taken Tamoxifen for the breast tenderness, but my specialist advised against it.
After the HDR Brachytherapy, I have 2 weeks break, and then I'm due for 15 EBRT sessions, with probably 3 months more of Casodex.
I'll update after Brachy.
I'm now one week on from a single High Dose Radiation Brachytherapy treatment at St James, Leeds, performed by Dr David Bottomley. This has come after 3 months of Casodex which has seen my PSA fall from 3.7 to its current 0.85.
In one week I will start a course of 15 EBRT sessions, to be followed by a further 2-3 months of Casodex, and then I'll be free! I have had quite bad breast enlargement and tenderness but no other symptoms from the hormones. I can live with the tenderness.
My brachy treatment was uneventful (apart from violent up-chucking as a result of the anesthetic). I have currently some rectal irritation, but I had hemorrhoids before the treatment, so this is to be expected. I will update further once my EBRT sessions are underway.
My PSA test, six months after ceasing all treatment, shows 0.47. The score three months ago (when, arguably there might have been some traces of Casodex in the system) was 0.45. So, I'm mightily relieved. I would imagine that the first couple of PSA readings after treatment, must be worrying for everyone.
I'm also no longer taking Flomax, and both urinary and sexual functions seem to be working well (albeit with support from my sponsor, Cialis). I'm so grateful to Dr David Bottomley from St James Oncology Institute in Leeds. I had exemplary care and attention.
Of course, I know I'm a long way from being out of the woods yet, but we'll watch things like a hawk. Anyone considering low-dose brachytherapy, combined with EBRT, please contact me or visit my blog.
After a most recent PSA of 0.72 (up from 0.47) taken in October 2011, I am coming to the end of 6 months in Australia. My onco would have liked me to have a further PSA in January, but not at the prospect of disrupting my trip to Oz. I will get it checked again later in April and update as soon as I have the result.
Side effects continue to be minimal: some less of erectile function, but nothing that a daily (low) dose of cialis can't fix.
It's been 12 months since my last update. I am now on 6-monthly PSA tests and consultations. My PSA results this past 12 months have been 0.24 and 0.23 (the most recent). So, if it stays like that, I'll be quite happy. It's been 3 years since my treatment, and I'm on no meds.
Life is pretty much normal - busy and fulfilling. I will always be grateful to the UK National Health Service for their free and excellent service, and especially to my onco at St James, Hospital, David Bottomley.
As ever, I am happy to mentor other warriors.
It's now 5 years since I had my diagnosis, and I'm delighted to say that my PSA is now at its lowest-ever level: 0.17. It has gone down steadily since I started treatment - but I didn't expect it to keep falling during that period.
Side effects are minimal, and seem to have settled.
Of course, I'm not assuming I'm out of the woods yet, but all is looking good. My check-ups are now annual, I'm travelling more than I've ever done, and looking forward not back.
I wish all fellow warriors well in their quest, and, as ever, I'm happy to answer any questions.
My annual PSA check revealed my lowest ever score: 0.11. So, I'm pleased it keeps falling so long after treatment. Also, after some rectal issues, my GP performed a DRE and said 'you're prostate is very smooth'. To be honest I'm quite surprised she found much to feel.
So, I guess it's all good. My side effects are the same: no incontinence, but some ED (made easier by Cialis).
I'm pleased to have been able to offer advice to a number of newly-diagnosed men this past year - again, the offer to help stands to any YANA NOW warrior.
It's now over 7 years since my initial diagnosis and treatment. I don't seem to have any lasting problems - PSA has remained very low.
I have however had major health problems in the past 12 months: I was diagnosed with colon cancer (stupidly didn't give a sample on my 60th birthday, which might have prevented surgery). Fortunately, I was deemed stage one and long-term prognosis is good. Unfortunately, due (according to my surgeon) to damage caused by prostate radiation (see my treatment story) the reconnection of the bowel went badly wrong and I nearly died of sepsis. 7 days in ICU.
But the good news is that I made a full recovery, though no-one is in a hurry to try to reconnect me! Despite living with an ileostomy life is good - I've visited 14 countries in the 12 months since my colon cancer treatment!
David's e-mail address is: firstname.lastname@example.org