Like others, the diagnosis of prostate cancer at the age of 56 was a bolt from the blue. All my health management has been focussed around heart disease prevention (exercise, healthy eating, trying to keep stress down etc) - so where did this thing come from?
The diagnosis followed from a blood test related to an unrelated visit to my GP - PSA level of 3.2 - repeat in 2 months 3.8 and 2 months further, up to 4.3. My GP and I agreed the time had come for a biopsy. Scores from the biopsy as follows:
3 out of 12 cores positive, 1 in left base, 2 in left apex - total positive cores of 6.5 mm out of a total of between 114 and 138 mm (cores were between 3 and 17 mm each). Massive research followed this diagnosis (thank you YANA).
For me, the numbers were really important in making a decision - they determine the chances of success from various treatments.
Main numbers as follows:
PSA = 4.3 (subsequently remeasured at 4.5) Stage = T1c Gleason of 6 (3+3) Prostate size = 28.4 cc
My GP wisely sent me to a Urologist and a Radiation Oncologist specialising in PC. From them (and my own research), it was apparent that the three treatment options for early stage PC are all [potentially] curative and have about the same long term (10 yrs plus) prognosis (85% non recurrence)
All treatments having a similar curative outcome, I was bemused at the bias towards surgery with its high incidence of side effects - having to relearn continence, and ED seeming commonplace.
So the choice came down to Brachytherapy or Active Surveillance. This is where the numbers were very helpful. Although there is a subset of men with my numbers who will die at a ripe old age of some non PC ailment, the chances of my PC being indolent appeared to be less than 15% (refer to the excellent Sloane-Kettering Pre Treatment nomograms) [I was not able to find a nomogram for Active Surveillance at this site - certainly Rob's diagnosis would have qualified him for some AS studies.]
So Active Surveillance (AS) for me would really be "Delaying the Inevitable" - and possibly having limited choices with poorer outcomes when the PC progresses.
Also, I would not be eligible for the major European (PRIAS) and US (John Hopkins) Active Surveillance programs as my PSA density is >15, more than 2 cores are positive, and I am less than 60 years old.
And who knows if the biopsy sampling is a true measure of the your PC?
So Brachytherapy has been the way to go for me - less side effects than other treatments, and would probably end up there (hopefully) through an AS regime at some point.
Fortunately this decision was made easier in that New Zealand is fortunate to have an excellent practitioner of Brachytherapy - John Matthews who has performed over 1,000 procedures since 1999 with excellent results. Although Brachytherapy is not covered by NZ's public health system, my private health insurance does cover it.
So yesterday, 16 March 2011 (now aged 57), was the long awaited day of the seed insertion (92 seeds of I 125), and so far the discomfort has been minimal. The insertion was done under general anaesthetic, so a night in hospital was required, but as I write this I feel a bit of a fraud in informing my employer that I will need two weeks off! I do anticipate some discomfort to come, however.
One thing has intrigued me about the experiences on the YANA website - Brachytherapy is underrepresented. [At March 2011, about 7.5% of the stories on Yana were from men who chose Brachtherapy - this is in line with US choices] In NZ, it is favoured by many. I can only think that men who undergo Brachytherapy have fewer side effects and therefore can get on with their lives without the need to share problems through YANA? [Many of the men post to YANA before they have therapy: many don't post to share problems, but to share successes and to emphasise that there is a life after a prostate cancer diagnosis, no matter what the choice of therapy was.]
I will continue to post my experiences. [Hopefully that will be the case - many men find that once they have recovered from the trauma and treatment (about two years usually) they simply put prostate cancer behind them and get on with their lives. That's understandable, but the men who come behind are really interested in the long term outcomes and an annual update (doesn't have to be long) serves one immediate purpose - the man posting his story is still alive!! Wish more people made diary notes though - between us, George and I had to send out almost 60 reminders for January 2010 postings that had not been updated. We got about 45 replies.]
Two last thoughts:
The freak out and need to make a decision phase after a PC diagnosis is terrible - once you have made a decision, and moved beyond that "Waiting Place" the whole thing is much easier to deal with.
The support of loved ones and friends, (particularly your wife) is invaluable - I have been greatly moved by the level of support and caring from everybody I have shared this "bolt from the blue" with.
It is now five weeks since the seed implantation and so far so good - better than expected.
Few side effects in first week or so, so back to work within a week of the procedure. Urinary effects kicked in after about 2 weeks - urgency and poor flow, difficulty voiding. This is apparently the worst time for side effects (4 to 8 weeks) when the radiation is strongest I am taking doxazosin (4 mg/day), but the lowering of blood pressure from alpha-blockers makes me tired and sleep fitfully. So I have experimented with reducing dosage, but am back to 4 mg as urinary effects got worse.
Otherwise pain and discomfort has been minimal. As for the old fella - all seems to be working fine (hooray!) - blood in ejaculate for a couple of weeks, and ejaculate volume much reduced. I am told this is due to a combination of the radiation and the alpha-blocker. CAT scan, X-ray and consultation with John Matthews after four weeks - seeds and dosage all good. I lost one seed on day two, but this it seems this is not a problem as brachytherapy is over-engineered for situations like this.
Next step is PSA and visit to urologist after 4 months (July 2011). I will report on progress as the radiation takes effect.
Just over a year since my seed implant in March 2011, and how am I doing? Great! All within expectations. I still have some urinary issues (getting up at night, occasional low flow), but improving all the time. My flow was on the low side anyway, and my oncologist has said it would be more than a year before normality returned. No incontinence at any stage. Some proctitis - also improving.
Sexually, all good and working fine, if somewhat different. Erections take a bit more effort and can be a bit fickle. The reduction in ejaculate (sometimes none at all) is a bit wierd, but is now the new normal. No complaints on this score, particularly in the context of (hopefully) having beaten PC.
My PSA dropped from 4.5 pre insertion (Mar 11) to 1.5 after 4 months, 1.7 after 7, and 0.8 after 10 months - whoopee! Hopefully next PSA in a months time will show continued reduction.
While I cannot speak for other BT patients, I am happy with my choice of treatment and where I am.
It is now over 16 months since the BT seed insertion in March 2011. PSA scores have tracked downwards as below, which is encouraging. Doctors (and me!) are optimistic that we have beaten this thing.
Feb 11 (prior to BT) 4.5
July 11 1.5
Oct 11 1.7
Jan 12 0.8
Apr 12 0.5
July 12 0.6
Side effects have settled down with little change since my last update in April. Urinary flow is fine, with occasional help from a minimal dose (1 to 2 mg per day) of Doxazosin. I have mild radiation proctitis which prompted a colonoscopy to ensure no other problems - all OK. Symptoms are easily managed by watching my diet and daily Metamucil. All still good with the old fellah.
All in all, I am in excellent health, with the PC experience behind me.
It is now over two years since the BT procedure. My PSA continues to decline after a slight rise in 2012 (possibly a small bump?):
Oct 2012 0.7
Jan 2013 0.45
Apr 2013 0.26
Little change to side effects (ie negligible). All seems to have settled down with urinary flow fine, and all good sexually.
I am confident that the PC has been beaten and the whole experience is now just a memory.
Well, it is over 3 years since my BT procedure. PSA has tracked downwards to the last reading of 0.1 - only need a 6 monthly test from now on. On my last visit to my radiation oncologist last year he "graduated" me - no need for any more consultations unless PSA starts to go up. PC risk now down amongst all the other risks you have at age 60.
Side effects are minimal and difficult to differentiate from normal aging effects. The old fellah works just fine, sometimes with a little help from the blue pill. I am very happy on that score.
I have some radiation induced proctitis (need to go often, soft stools), so will need to watch that going forward, but this has not had any affect on what I choose to do.
A PC diagnosis is a really hard experience - so many options, all with some potential side effects. For me, I am happy that brachytharapy was the right choice - seems to have sorted out the PC with no significant side effects.
To those men recently diagnosed, I wish you the determination to understand your diagnosis and options, and then the courage to make and live with your decision.
It is now over 4 years since I had BT.
All is well, with my last PSA reading (April 2015) being 0.07
No side effects - PC is something that happened in the past, not a factor in the present!
It is over five years since my BT treatment. My health is excellent and the low PSA score indicates the PC appears to be beaten.
I hardly think of it anymore and just focus on getting the most out of each day.
The PC experience has emphasized the need to have a regular health check. This is now an annual ritual!
To all men on the PC journey, have faith in the treatments offered. I and many others are examples of how medical science can beat this thing. Good luck to you all
Star's e-mail address is: firstname.lastname@example.org